Stephanie going home from the hospital

Hello all once again from the CIO,

Stephanie tells me that she will be released from the hospital today and will be home late this afternoon. So watch this space, she will be posting soon I imagine!

A Note About Twitter Updates

Hello again all from the CIO,

I wanted to mention, if you have not noticed, Stephanie has been able to post her status/updates via Twitter on the right side navigation ----->

She had mentioned that is why she moved it up so it is now 'above the fold' on the page, so it is more visible.

An Update on Stephanie from the CIO...Part III

Good evening again all,

I just returned from the hospital, Stephanie was moved from the recovery area around 8 this evening and is now resting in her own room. The good news is she has CNN, her cell phone gets good reception and her bed is near some windows in her room. Flowers would probably be an excellent addition to her room (hint, hint) because someone just moved out of her room, they cleaned it from top to bottom, it's clean, but kinda empty. She will be there for a few days minimally, so I know you all know how much she loves flowers of any kind, I'd tell you to send a pizza too, but that probably isn't such a good idea ;-)

ANYway, feel free to 'comment' with any questions, the good news is she made it through today, on to the next phase, when the cancer is GONE! 

An Update on Stephanie from the CIO...Part II

Hello again all,

I just heard from my source, Lloyd, Stephanie has been out of surgery for about an hour and is in recovery. Preliminary tests show that they removed all the cancer, so I'm off to see her and get some further details from her Dad for all of you.

One last post when I return home, stay tuned...   

An Update on Stephanie from the CIO...

(A photo of the Big Board from the hospital, if you look closely, you will see 'VOS' on the left hand side, that's our girl, scheduled and checked in (hence the red line through the 11:30...)

Hello again all in Blog-land,

I wanted to let you know, Stephanie is now in surgery...

She arrived at the hospital at 10am, was checked in at 11:15, went upstairs to the second floor to get her vials taken and went in to pre-op at noon. As you know from previous posts, surgery was scheduled for 1pm, that was still the case as of noon. Although now that I look at the board, looks like 1:30.

Please feel free to 'comment' if you have individual questions, from here I will check on her status and let you know when I hear she is out of surgery. I'm also going back to the hospital this evening when I find out that she has been moved to a room for recovery.

D-Day

Or something like that. It's early, my head hurts and I want caffeine.

I'm not nervous, or worried or anything like that, but I am really, really sick of having to run to the bathroom every 3 minutes! And my head hurts. But, we'll be off in less than a half hour, aiming for a 10:30 or earlier arrival in Mountain View. Cross your fingers for good traffic karma and good parking karma and all those other things.

The anesthesiologist called me last night, and unlike the one from my last surgery, this one seems HUMAN, with an actual personality and sense of humor, so I'm hoping he'll get me hooked up to a hydrating and sedating IV right away.

This is it....I'll Twitter in from the road if I'm bored, otherwise, the next updates will happen while I'm unconscious.

Love y'all.

This stuff tastes gross!

Nasty!
Need I say more?

Thank god for prior life experience tossing Jaeger shots, huh? I guess you never know what's going to come in handy someday.

Surgery Time Change!

Ok, we just had a slight scheduling change. Surgery is now starting at 1:00, not 1:45, so check in is at 11:00, not 11:45, and lobby meet-up pre-surgery party and hoedown is at 10:30.
Ok then.

I figure, the earlier, the better. And the sooner they hook me up to an IV and I'm not dehydrated, even better-better! Just had a massage. Massage good. Now I'm off to pack and fuss around in my room a bit before giving in to total relaxation until surgery time.
*yawn*

T-minus 26 hours and counting...

Hmm, so far nothing is going as planned today. I've only been out of bed for 15 minutes, and that's the first thing that isn't working as planned. The plan was to get up at 9, get the bathroom scoured clean, and then have plenty of time to eat my leftover sweet and sour shrimp for breakfast, get showered and dressed and head to my massage at noon. It's nearly 10, and I haven't even made it to anything besides crawling out of bed, because I feel like hell.

Imagine that, feeling like shit the day before my cancer surgery. The nerve of my body! All I have to say is that I have to get the bathroom cleaned before I leave tomorrow, and I have to finish packing and setting up my bedroom. Those are pretty much the absolute-must items on my list for the day. The massage is just a nice thing.

Regardless, the important thing is that tomorrow at this time I will be somewhere between here and there, wending my way toward surgery and freedom from this alien nastiness growing inside me. Unfortunately, I'll be dehydrated as hell and undoubtedly very crabby about that, but such is life. It will still be cause for celebration. I'll take the victories I can get.

I almost feel better-enough to go clean my bathroom. See, things are moving forward... I want to stretch my last solid food for at least a week as close to my noon cut-off as possible, so breakfast has to wait a while longer. One thing at a time...

T minus 50 hours and counting...

Ah, we're at a point where I can actually count hours until hospital arrival. I'm getting nervous, to say the least. Not nervous about getting the surgery done, more like nervous that something will go wrong and delay it! It's like that pre-tradeshow bundle of nerves that would keep me up all night the night before I was supposed to get on a plane, running lists in my head....

No yoga today, as it turns out, due to a slight scheduling snafu, but that actually works out fine, because I woke up with a huge headache. Tension, which undoubtedly would have been helped by the yoga, but I'm perfectly ok with not driving up to Chico and working on it at home. I've got plenty to keep me occupied here...


Otherwise, I'm pleased to report that I have nothing to report. Pain...lots of pain... I think the damned thing knows its days are numbered! Otherwise, just various housekeeping tasks and preparing to pack. Opinion question for anyone down in the Bay Area: Do I want my big long fluffy warm robe, or my shorter lighter robe? If I pack the big one, it practically needs its own suitcase, but I don't want to be cold. Hmm.


Oops, now there is something to report: I got a call back from the doctor's nurse just now, confirming that the surgery will indeed be scheduled as an open laparotomy procedure, which means I will have a longer post-op recovery period (fine, whatever) and will be in the hospital until at least Saturday, perhaps as long as Monday. Fine by me, just make it go away!!!! I'm not sure if the change will affect the actual OR time for the surgery; if open takes longer than lap, or vice versa, since looking through a little tube might well take longer than just slicing me open wide, so that's up in the air too. I'm quite sure the CIO will update everyone as soon as we know. Off to do exciting pre-op tasks like laundry.

Monochrome dogs

Our neighbors across the street have the most gorgeous dogs, and I get to babysit them this weekend. Therefore, y'all get to see pictures of them.


This is Winston. He likes to almost knock me over by leaning on me when I pet him.
This is Jasmine. She's quite camera shy but tummy rubs work every time.

Cameras are not for eating.









This is the best size comparison I could get, because I could never get both of them to look at me at the same time. Guess who the alpha dog is?

Demon eyes! But at least I finally got her to look at the camera. She's so cuddly you want to just pick her up and take her home with you!

Sunday! Sunday!

And I refuse to do anything productive. At all. So there.

Glad to see that the public alert system is up and working, thank you to my dedicated CIO. See, I'm not the only one who's anal.

:-D

Nothing new to report. I slept in, sorta. I am in pain. Again. A pretty fair amount. Probably about a 6. There will be pain pills, and reading books and hopefully some Chinese food in my immediate future. Oh, and I get to go visit with my friends across the street, Winston, a Great Dane the size of a pony and his fearless sidekick, Jasmine, a Mini Schnauzer who will steal food right out of his mouth. Other than that, who knows.

This is a test of the emergency brodcastng system, this is only a test...

Hello all in Blog-land!

This is Stephanie's appointed Chief Information Officer testing to make sure I have access to the blog to keep you updated from Mountain View, CA when the time comes this coming Wednesday.

Just so you know, at this point I'm planning a pre 1:45pm information blog entry (will be posted probably around 2pm PST detailing any information before her appointment), post 1:45pm entry (probably around 6-7 containing any new information post procedure) & if I have one a post-post 1:45pm entry if there is any new information to report.


Also, those of you on the 'update by email' list, you will get an email around 2-ish as well from me, if you have access to the blog, you should check there too, but I will try to maintain the same information in both places not knowing the overlap, if any...

To keep in the theme, I was looking for the Remarkable Cow, but found a good cat, let me know if there is anything else you need Stephanie ~p

Weekend. Home stretch. Yawn.

I'm tired. Exhausted, beat, pooped. And I haven't even been out of bed for an hour.

Yesterday's yoga session was as good or better than the first one. Lisa actually put me through some poses this time, and I am paying for it now. I'd better do some serious stretching on my own today or I will freeze up like a statue. I guess I'm more flexible than I thought though, because she's impressed with how far I can stretch things. That's good, right?

Yesterday was nice, having a wonderful Red Lobster lunch with my husband after yoga, and then running around a bit doing some shopping and errands. I've been so crazy trying to get ready to go off and have surgery that I haven't been able to spend much time with him, which is just silly, so this was a nice change. The kids are well on their way to recovering from the Martian Death Flu, as I'm calling it, and thus far, I've been spared. Yay!

It seems like the latest plan for surgery day on Weds is that Lloyd and I will meet Dad, my brother, and Pabs in the hospital lobby (I keep typing "hotel lobby" for some strange reason...) at 11:15 so we can get ourselves organized and visit a little bit before my 11:45 check in time. If you're in the area, hey, come on by, it's a party! BYOB. And BYOF, because I can't eat or drink, so I'm not springing for snacks.

Today, just some very managable small goals involving crafy things, mainly. Felting of hats, sewing on of pockets (who makes robes without pockets? Sheesh!), finishing up some more flax and lentil filled compression pillows, stuff like that. Monday is more yoga, and a hair appointment, leaving Tuesday for the final cleaning and fussing about in the bedroom and bathroom and packing.

You notice that I left tomorrow off the list. Ah ha! Tomorrow, I am taking the day off. Actually, I plan on starting sometime this afternoon. I am going to rest, meditate, read, and otherwise do nothing more productive than melt into the couch. I've been really damned productive thus far, I'm tired, I hurt like hell and I'm cramping and bleeding again, joy of joys, so it's time to take a break.

And that's about it...

Wednesday can not come soon enough!
Ow.

Support, and then some

Wowee, I do live in a small town!

I've been very open about telling our friends and neighbors that I have cancer, put the magnet on my car, you know. Our neighbors have offered us every bit of help and support we could ever need or want, and they're amazing. But that's just our street, right? Today, I'm learning what a small town we live in.

The secretary at the middle school, Meredith, is a sweetheart and has been a great help since we moved in, so of course we told her. Next thing I know, she's offering me her thoughts and prayers and support and offering to look out for Anna if she got upset at school while I was in the hospital. Then we pick up Anna's homework packet, and one of her teachers wrote on the assignment sheet that he'd gone through a similar hard time in his family last year, and wanted to talk to her about it and help her through it.

THEN we get a card in the mail from our local B of A, signed by everyone in the branch, thanking us for our business and expressing their support and good wishes for me getting through this.
Hand written.

I'm just kind of blown away! Not in a bad way, but it's totally surreal.

Anyone got a plastic bubble I can borrow?

Well, we got one kid back to school, even though he still sounds like a freight train when he coughs, but the little one is back in bed. It sounds like a colony of aliens are living in her lungs... So far, so good, but my throat hurts. And I'm tired. And I'm hurt-y. And whiny.

But, more steps in the march toward surgery were completed yesterday. Blood given, nails cemented back to my fingers. Major Walmart haul completed, so now I have plenty of flavored bubbly water, low-sugar electrolyte replacing drinks, clear liquid soups, sugar free pudding, jello and popsicles, and a nice collection of bland microwavable comfort-food meals Lloyd can make me with very little fuss once I'm home and able to eat anything. Utterly thrilling stuff, but necessary. And it kept me out of the house and away from the infectious ones.

The pre-admit interview with the hospital told me what to expect pre- and post-surgery. I'll be in the OR for about/at least 3 and 1/2 hours, and in recovery for another two. Doing the math, that means if they start on time at 1:45, I should be in surgery until about 5:15, and in recovery until at least 7:15, so not into a room any time before 7:30 or 8, just after visiting hours are over.

It is probable that I will end up on the 5th floor, East ward. The phone number to that ward is 650-940-7120. Feel free to impersonate a family member if you aren't actually related to me and call for information. They have no idea how many siblings I have. Oh, and the hospital computer systems can not handle hyphenated last names like mine, so my records have it all blurred together as one long, bizarre last name--Maidennamemarriedname. Confusing. (Ask me if you're not sure just how that comes out, because I really don't want to post it up here)

Dad will be visited in the waiting room by the surgeon once he's done with me, and then the phone calls can start while I'm still in recovery, so the word should go out around 6 on how things went. I do, of course, have a plan for phone calls, email and blog updates. Dad and Lloyd will make calls, and my unofficial surgery CIO will help get the word out to everyone via email and a post here on the blog. I guess what's sad about that is that she's had to do the same job for me something like 4 times previously, and we're getting it down to an art!

The oncologist's nurse called me back yesterday to confirm the message I left her, saying that my gut (along with everyone I've talked to) said I wanted to go with the open laparotomy instead of the scope. She says she does have to confirm that with the doc, but it should be fine by him. He did offer me the choice in the first place. So, that was one more final piece settling in place, and should be confirmed for sure-for sure today or Monday. Yay. It's a longer, nastier recovery, but at least I'll have peace of mind that they really did get a good look inside there and remove anything and everything I have no immediate use for.

Today, more yoga-therapy, lunch out with my husband and hopefully some rest this afternoon. I didn't get my nap yesterday, and it definitely made a difference. I think I'm still shocked at how low my energy levels get. Then again, I still haven't got my mind entirely around the fact that I have cancer. Go figure.

Time to go get ready to get relaxed. Namaste.

Germs! Germs!

They're all sick! Icky sicky! Only one of three kids went to school today, and Lloyd is in bed sick too. I think I need to spend as much time as possible outside the house. Lucky for me, I need to get a few quarts of blood drawn from me, get my nails stuck back together and hit Walmart for a few jumbo economy size packs of kids' cold medicine and other essentials. Unfortunately, I'm in a lot of pain today, for reasons unknown, but I'm learning how to just power through that.

Bit by bit things here in the house are coming together for my grand departure. Yesterday, I managed to finish winding every single loose skein of yarn in the house into pretty balls. Actually, they look more like little cakes when they come off the ball winder, but that's not the point. The point is that my big working desk in the living room is no longer covered in skeins of yarn. And I have approximately 6.5 gigs of music loaded on my MP3 player, and still have room for nearly 3.5 gigs more! Yes, gigs. Must not be unprepared. Gotta love the new high capacity microSD chips. 8 gigs on something the size of my pinky fingernail.

There are about a thousand of those ridiculous little projects that need doing before I head down for surgery, just because I'm anal and obsessive and want to come home to cleanliness. But, it keeps me busy and occupied instead of bored and worrying. It's pretty sad when things like filing, organizing my pjs and cleaning the bathroom are positives in my world, but there you have it. Anyone who's been to my house can tell you my daily life isn't much more exciting than that anyway!

[can we say "killing time," boys and girls? the hospital pre-admit department is supposed to call in a half hour to have a phone appointment and I can't go get ready to leave until then...]

In other news, shameless plug-- I got all my cancer bling the other day, and if you want cancer bling, visit http://www.choosehope.com/ for all the goodies. I stocked up on some of those ubiquitous silicone bracelets, the ubiquitous ribbon car magnets, some great "ring of hope" necklaces for me and Anna in our appointed cancer color of bright teal, (I hate teal! It's KeraVision blue! Not Reflex Blue, or Pantone 286, but the one that's more like Pantone 322. I mean, it's ok, for things like blog backgrounds, but not for me to wear. ) and a "Cancer Sucks" t-shirt. I saw the ring from the necklace on Aimee's keychain and hunted it down. :-) I may have to invest in some "Cancer Sucks" yoga pants or a sweatshirt too at some point.

Mainly, I wanted cancer bling to support the research, of course, (which Choose Hope does) and to give to Anna so that she and I have matching necklaces and bracelets. It makes her feel connected and like she's "doing" something and helps with the anxiety, which is good.

Ok hospital person, hurry up and call. I'm bored and in pain, which is a deadly combo.

Om...

Ok, I think private yoga lessons are better than therapy and almost as good as a massage. While my new friend Lisa definitely has her work cut out for her teaching ME to relax and (even better, ha ha-) "let go," I actually did really well and came out of it feeling very relaxed and very good. Scary. Of course, I paid for it later, and am still paying (ow) but in the good way. Mostly. I'm managing to cram in two more sessions before surgery.

Yeah, if you would have told me two years ago I'd be doing all this stuff, I would have been quoting Cartman about new-age hippie crystal bullcrap, but it actually works.

The big challenge for the rest of the week, besides all of my pre-surgery preparations is going to be staying healthy enough to HAVE surgery. (Kind of ironic, I have to be healthy in order to go to the hospital) The kids have been passing around an evil cold, and now Anna's home sick and Lloyd has it too. Since I usually catch everything that blows down our street, and I already have my suspicions, it should make for an interesting week.

Very little else to report. Just trying to get all the minutiae under control so I can come home to the kind of OCD order I need in a post-surgery state. I think I'll get my nails done today. Blood work tomorrow. Mainly sleepy at this point.

"Nothing Scary"

And I quote, "nothing scary," is what the mammogram technician, ultrasound technician and radiologist on duty said they saw when they did a quick-read on my films yesterday.

Now, of course, that little bitty irritating lump that I can find with no trouble at all did like the weird noise your car makes when you take it to the mechanic. You know, the noise that refuses to show up when anyone mechanically inclined listens for it? Yeah, the little booger can apparently be only felt or found by me, not by medical personnel.

But, I'll take whatever good news I can get. The mammo films will get a thorough read by a radiologist, and then actually some sort of second read by CAD-based software, which has stats saying it detects up to 71% of cancers missed by standard human interpretation of the films. That works. Hopefully, "nothing scary" will remain the operative answer though.

Today's goal is zen. I'm heading up to Chico to the yoga studio to have a nice RN yoga instructor try to teach me to relax.

HA.

HA.

HA!

Pretty funny, isn't it? I should probably be offering to pay the poor woman double her normal fee.

Om...........

Mammogram Day

Oh, lucky me, it's time for a mammogram and ultrasound just to make sure that really is just a little calcification of some sort and not another nasty lurking in my left boob. At least it means another trip up to the pine trees on top of the ridge in Paradise. There has to be some silver lining, right?

In other good news, I have private yoga lessons set up for tomorrow and Friday. And blood work on Thursday. And phone calls to make, and mental lists of questions to put to paper, and cds to rip and shopping and cleaning and organizing and laundry and packing. Hmm. I think post-op is actually going to seem quite restful compared to my week of fun and games pre-op! At least my only main job after surgery is to sleep a lot.

Sleeping sounds good right now. I don't think I'm awake yet. And my head hurts. Unfortunately, today I feel like I have cancer again. Blech!

Oh, and the little one thoroughly enjoyed her birthday and her birthday loot. The only slight hitch has been in the area of fashion advice, and me trying to explain that while personal style is a personal choice, wearing more than one tie at a time is generally frowned upon. Or at least looked at very, very strangely.

Hippo birdie & 7 elephants!

Yay for elephants! And tigers, and frisbee dogs, and goats riding miniature horses, a porcupine who pops balloons and one wee little piggie who just kind of ran out there for the sake of running out there.

The circus was indeed spectacular, and a good time was had by all, even the skeptical, cynical older ones.
I have to say--this was one hell of a show. The aerial acts, acrobats and special effects they had were incredible, and the lead clown they had kind of acting as the theme player of the show was actually a great, funny European style clown in the tradition of my own personal clown hero, Olaf. For those who know, you know that I know a thing or two about aerialists and a clown named Olaf.

We all walked around the "animal open house" outside, where we got to watch some very contented elephants giving themselves dirt baths and munching from only a few feet away. Once inside, Anna and I hit the show floor for the all-access pre-show, where kids can try on circus costumes, pose on props, meet clowns, most importantly, watch Kelly Ann the elephant paint a pretty picture. Unfortunately, we were not chosen from the entries to win the painting. We were bummed.

However, we did spend outrageous amounts of money on things like cotton candy in giant circus tophats and sparkly matching t-shirts for us girls and everyone did a lot of ooh- and ahhh-ing and laughing. It was definitely a great end of summer, forget-I-have-to-go-have-cancer event.

Now, we must move on to the next phase of our birthday celebrations, today being the actual day, and clean the kitchen up so that I can make a birthday cake modeled after a giant Oreo. Yes, I can make Oreo filling. :-)

I think she's going to burst if I make her wait too much longer into the day to get her presents, but we want to make the suspense last for a while and it's only 10 am, so she's got some waiting to do still.

Going to the circus is a great way to forget you have pain. The pain comes back, unfortunately, but at least it's manageable now with the meds. Lots to get done between now and surgery day...

Circus Day!!!!

Today marks the official beginning of the weekend long celebration of Anna's 11th birthday!

This is, of course, a grand event. I made very sure that no medical bull interfered with the celebrations. Today, we'll be having brunch, and then leaving for the drive down to the Sacramento area around1:30. Late lunch/early dinner at Macaroni Grill (birthday girl's choice), followed by a stop at Grandma's and then off to the big Ringling Bros. Barnum & Bailey circus. The kids have never been to a B I G circus like this before, and I think they're really going to be wowed.

Now, y'all may have your own feelings about whether circuses with animals are good or bad, from an animal rights perspective, and that's fine, but from all the deep reading and research I've done, I find that the big Ringling show is actually not a bad place at all. I respect that others disagree with me, but I'm a pretty big animal lover, I've researched it quite a bit and I'm pretty comfortable with what I know. Smaller regional shows and fly-by-night outfits...entirely different story. But Ringling is generally a good place, IMHO.

90 minutes before the show, they have "animal open house" out in the parking lot, where you can get pretty close to the animals, and then for 60 minutes before the show, you have all-access to the actual show rings on the floor of the arena, to watch an elephant paint and all kinds of other stuff. It should be a kick for them.

Tomorrow, we'll cook dinner at home, possibly with a couple of guests, and have cake and presents. For the next two full days, I get to not have cancer if I choose. I get to have fun. So there! Take that cancer.

Hippo Birdie Two Ewe Deer Anna!

Toss another bat on the grille, Bob...

Well, once again, there is blissfully little to report. I bought a pretty, cheesy, oh-so-early-1980s faceted crystal on a string to hang in my bedroom window and make pretty cheesy rainbows around the room to amuse me and make the dog insane. It's the little things.

The only interesting medical news is that Dr. Dickhead, as I'll call him, the former OB/GYN, finally bothered to call me yesterday. Finally. I had the CT scans on the 2nd, and dear doctor finally called yesterday to tell me he'd seen the results and gee, had I had any luck getting into some financial aid program so I could get some treatment?

There are rare times when I curse my mother and father for raising me so well that I'm unable to express my true feelings in moments like this. I was unfailingly polite, nice, and burned no bridges while telling him that I had sought oncology care in the Bay Area and was approximately 22 steps ahead of him in the entire process by now. I will have to carefully craft a letter explaining to him why I will never come back to see him and his toadlike bedside manner again. Hmm, that's not fair to the toads.

Speaking of toads, which we weren't really, but on a similar theme... In lieu of anything noteworthy to report, and in honor of the impending Halloween season, I offer the following as a cautionary tale to baby bats everywhere:

See? Mommy TOLD you not to cross the road, now didn't she?

This poor little guy met his end somewhere on highway 113 between Dixon and 99, way back when Lloyd went down to visit his dad in early August. He was found, as you see him, some days or weeks later, and sadly forgotten since. He remains there still. We think of him as sort of a mascot-slash-hood ornament-slash-science project. His name is Steve.

Blah Blah Blog

Again, nothing much interesting to report. I painted my toenails bright teal in honor of my official cancer color. Teal. Ick. But oh well.

Pre-op phone interviews and lab tests have been figured out. The mondo Costco trip is done. Birthday goodies for a small girl have been purchased at Hot Topic, and just need wrapping. I got a teeny ceramic black cat in the Halloween section at Target and feel fulfilled. (I almost-sort-of collect vintage and vintage-looking Halloween decorations)

Lloyd and I even took the luxury of wandering around Chico's little excuse for a mall just for the sake of doing it. I figure I'd better enjoy my excursions to the max before my enforced confinement!

I also used my newfound status as a wise, old, world-weary, outspoken cancer patient to climb briefly on a soapbox with the adorable girls in Hot Topic. They were sweet, and talkative, and didn't give me the usual "you are too damned old to walk through our door" look I usually get in there. They were probably in their latest teens or early 20s, since they were working on a school day, and they helped me out with a little plastic "placeholder" piece of jewelry for my belly piercing that I can keep in during surgery.

That led to one asking politely what kind of surgery I was having, and I used the opportunity to ask if they'd had the Gardasil vaccine. Neither one had, so I took the liberty of telling them how strongly I felt that they really, really should, so that they didn't have to go have a bunch of their insides ripped out later, like I do. Amazingly, I actually left there feeling like they might just go do it.

Good.

I have a feeling that my future gift needs for the little one will involve many shopping trips back to that Hot Topic, so maybe I'll check up on them later. Now, I will rest. A lot.

And, yes, today is that day that I will never forget. An awful lot of indelible awful memories are etched in my brain from that horrible day 7 years ago, and I've had a chance to share some of that with the kids, as they grow older and understand.

My most sincere condolences go out to anyone and everyone who lost someone that day.

http://nyc.gov/html/fdny/media/tribute/tribute.html

S U R G E R Y

Ok gang, here we go!!

Surgery is scheduled for Wednesday, September 24 at 1:45 pm with an 11:45 am hospital check in.

We're discussing whether or not it will be a laparoscopic surgery or an open, because I really want to get this crap out of me and not miss any...so that will affect my stay time. If it's lap, I'll be in there 1-2 nights; open, more like 2-3 nights. I'm ready either way. Just make it be gone!!!!!!!!!!!!!!!!!!!

Nothing, in the good way.

I'm pleased to report that there is nothing of real interest to report. No news yet on a surgery date. I am scheduled for a mammogram and breast ultrasound on Monday to make sure I haven't got anything nasty going on up there too, but that's about it. I get to go up to the pretty cancer center at Feather River for that.

I'm mainly focusing on getting all those chickens in a row; the nuts and bolts of where I will stay down in the Bay Area the night before surgery, trying to get things organized both inside my head and inside my house for after surgery, all of that stuff. Not having to be in pain 24/7 makes it a lot easier to get some of those things done!

The only hard part is making myself do the boring stuff when I'd rather use my new, liberating, pain-free periods to do fun things like play with yarn. Then again, I can't go off for surgery and leave all these un-wound skeins scattered all over my work desk, now can I? We have a little girl's birthday this weekend to get ready for too.

The little girl is very, very anxious and nervous about all of this. We're being 100% open and honest about things and encouraging lots of questions, and keeping the kids updated on all the new progress and explaining it as we go, but each of them processes things in a different way, and this is very scary for her. I'm trying to work on ways to help her work through her fears and anxiety and I welcome suggestions.

I've already told her that if she needs to talk or ask questions--which she should do lots of, and not bottle anything up--that even if I'm not available because I'm at the hospital or something, and she doesn't want to talk to her Dad about it, she can always call her grandma, and even her mom, but she can also call her big sister, MY mom, and my auntie too. I'm trying to give her tools...and it was just great, perfect timing that her big sister called minutes after we'd been talking about this all, so I put her on the phone for a little bit. She seemed to feel much, much better afterward.

I'm trying to make it clear to all the kids that their dad and I need their help to get through this, that it's a team sport, and I'm trying to think of ways to enlist them a bit more actively in the process.

I want to come up with some sort of "jobs" for lack of a better word that each of them could do as a concrete part of the effort to get me well. All three were great, and really helpful after my surgery in March, carrying things for me, getting me ice, whatever. The little one was home from school a couple days then (I forget why, but I think part of it was worrying about me disguised as illness) and she spent the first several days of my return home up in bed with me watching movies and "getting" random things for me. I've already told her that I really need her to take good care of herself, and make sure she's getting the support she needs through this, because I really need her to be there to support me and help take care of me.

This recovery, especially if it's an open surgery, is going to be much longer, much harder, and psychologically much more complex for all of us. I think everyone's going to do better if they have some defined roles to play in the process.

Ideas?
Keep 'em coming, please. Pretty please.
All the moms out there have lots of experience that I could really use right now.

I'm also going to be starting a list along the sidebar over there ---> that was inspired by a funny conversation with Mom back when my baby cousin was injured. We joked that we should write a book or something about "Things (that your mother would approve of) To Do In Bed."

Please post your ideas to be added to that list too!
See, everyone has to help.

Some News Is Good News!

Damn, but it feels good to know SOMEthing about something for once!

The oncology visit yesterday was very nice. Great doctor, nice staff, seems like I'm in good hands. His preliminary* staging is that the tumor is a Stage 1B1 tumor, at about 3 cm+ in size. At this stage, it is entirely operable, through what is called a radical trachelectomy, which is a removal of the entire cervix, as well as a portion of the upper vaginal canal and the perimetrium tissues surrounding the cervix, to allow him to get at the pelvic lymph nodes and get those boogers out too.
*preliminary is the best we're going to get until after surgery, but I'll take it

At this stage, Dr. Pisani says that the odds of the lymph nodes being involved is only about 15%--not bad at all--but let's get those while we're in there, shall we? (Hell, is there anything else extraneous he can pull while he's there?) Generally, there is no need for either radiation or chemo after this type of deal unless pathology finds that there is a significant lymph node involvement, or some other bizarre distant metastasis. That said, my handy-dandy cancer reference book gives the projected 5 year survival rate for this stage at 70-95%, and those are pretty decent odds.

Surgery is being scheduled. Dr. Pisani says that he will have his partner, Dr. Chen, assist during my procedure, so their team and the hospital are coordinating to see how soon they can get me in an OR. Meantime, I will be doing things like getting a mammogram, just to be on the safe side, cutting NSAIDs and caffeine and such out of my life again, getting set up for some private yoga instruction and otherwise trying to get things in order and ready.

The hope is that this will be entirely laparoscopic, with a 1-2 night hospital stay. There is a chance it could require a laparotomy bikini cut, which would increase the hospital stay by a day or two. During the surgery, he'll place stents in both ureters, which will stay in place until well after surgery and he'll remove those in his office later. I may be on a catheter for many days, or even up to two weeks afterwards, but catheters don't bother me, especially if it did end up being an open surgery--hell, the fewer times I have to get up the better, and we all know how often I have to get up to pee!

Again, lots of this stuff will be determined in the OR, so no way to tell now if I'll have an easy lap recovery, or be looking at a full 8-week downtime from open surgery, but I know what I'm getting into either way.

The one thing Dr. Pisani can't explain is the pain I'm in. He says it is rare for this size tumor in this place to cause pain like I'm feeling, but at least he believes me that I am in pain, and is willing to do something about it. Trust me, it's there.

The other good news of the day is that El Camino Hospital has a very nice cancer center, which actually has a concierge. Apparently, her job is to help you coordinate all of the moving pieces to your treatment, find resources and support services, etc, etc. She is very nice, sent me home with a giant pile of reading material and such, and seems like she'll be a valuable source as we move through all of this. It's a very nice place, and I came out of the entire visit feeling like I'd had a weight lifted off me.

I mean, this is me we're talking about... tell me "you have cancer, sit and wait and someone will get back to you someday, they're busy" and I turn into a blathering wreck. Sit me down and speak to me as if I DO have a brain and spent many years working around doctors and FDA documents and very smart people, and speak in concrete medical terms with lots of big words, give me an idea of where I stand and tell me what to DO about it, and tell me I might be able to have cool-o new robotic surgery, and I'm a happy person. I understand things like informed consent forms and treatment protocols!

Psychologically, for someone like me, it's actually useful to make me feel like I am an active participant in the entire process, instead of just patting me on the head like a slightly slow 2-year-old.

So, the next big news will come when we find out when surgery will be, but I have lots of things to do to prepare now, "homework" of sorts, and a great reduction in that crushing sense of dread of the unknown. We're in familiar territory now... I'm even already planning my survival-slash-victory tattoo. {insert evil laugh here}

I feel like I'm forgetting something, but I forget what it is...so, that's probably it. I think now, finally, I'm going to be able to come to terms with my new identity as a CANCER PATIENT and I'm devoting today to relaxing and figuring out what that means, and marshalling my resources. Lots to consider and still a scary road ahead, BUT I feel like I at least have a map or something now.

That merits dancing chickens for today.

Watch This Space --------->

Ahh, it's oncology day, and I'm a nervous wreck! Doesn't help that I've been up and down since 4 am in pain. Hopefully my nice new oncologist will be able to do something about that too. I guess I always knew that cancer SUCKED, obviously, but for some reason it never registered to me just how much it HURT. I think I always associated the pain with the chemo or something, not with the cancer itself, before treatment.

And then there are the times when I feel utterly normal and could forget I had the damned thing. They are brief, fleeting times, but they do exist.

Anyway, we're off around 11, and no idea when we'll be back-sometime after the 3 pm appointment is done, fighting our way back up 237 at rush hour, making our way to Hayward for dinner (if it kills me, I am eating dinner in Hayward!!!!!!!!!!!!), fighting rush hour across the bridge up in Benicia, and fighting rush hours up 80 until we hit 113. Lloyd thinks 10 pm, I'm leaning more toward 8:30, so we'll see. If it takes until 10, I will not be pleased.

Luckily, we have three very capable kids around these days, and some wonderful neighbors backing us up, so I don't feel like I have to worry about things here at all.

Since I have no idea what I'll learn at this visit today, and how earth-shaking it is, and how soon I'll be back in front of a computer to post it, I've moved the Twitter feed up to the top of the page. If there is anything earth-shaking to report, like a surgery date or something, I'll Twitter it in from the road. Or, if I just get bored. Damn, I love technology!

All I gotta say is that I really hope this visit gives me some concrete, useful information, like when surgery will be, what kind of treatment to expect afterward, some approximation of how bad this booger is, stuff like that. SOMETHING that I can use to show some sort of progress. I think that hope is why I'm so antsy. I'm ready to be done now.

I'd post another catbox picture, but it would look suspiciously like the first one, even if it is another day. Maybe I should keep a scoreboard. So far, since I've paid attention this week, it's Oz 3, Oliver 1, Gracie 0. Poor Emma doesn't try very hard.

Today I am very, very anxious, but cautiously hopeful.

I'll go knit now.

All Quiet On the Western Front

Or wherever it is that I am. Luckily, there is nothing at all noteworthy to report today, other than the fact that the pain woke me up a bunch of times again, and it's really starting to piss me off. Yesterday was pretty yucky, hopefully today will be better. I have a ton of unspun wool calling my name, so I'm going to park myself in front of the tv in my sock monkey pjs and play with bits of fluff and hope for the best.

I have to spend some time somewhere in the day gathering materials to take with me to the oncologist tomorrow, and helping get things ready for the children so they can handle things while we're gone tomorrow, but none of that needs to be addressed anywhere near this early in the morning. I'm going to savor this part, where everyone else is either still asleep or doing a good job of faking it.

And just for the record, I'm allowed to hate it when my mother is right.

Paradise, Good News & Bad News

Well, our trip up to Paradise was definitely worth it. The entire reason for going, me putting my signature on precisely 1 sheet of paper, sounds minor, but the results have been major.

First of all, I discovered all that the Feather River Cancer Center has to offer. I may be able to do some of my post-op therapies there, be it radiation, chemo or both. They have an affiliation with Loma Linda and have a radiation thingamabob that's the absolute state of the art, no one else has one, blah blah. They have nutritionist support and massage available when you get treatment there. They have a healing garden with a burbling stream and waterfalls that I'm quite fond of already, a giant tank full of some of the most colorful, beautiful freshwater tropical fish I've ever seen, and the bonus of being located up on the mountain ridge, underneath towering pines.

Most importantly, they have Shelley, who is a social worker there. Lloyd found her through some combination of phone calls, and she worked some sort of magic that signed me up for full-scope Medi-Cal coverage for the duration of my cancer treatment, through the federally funded Breast & Cervical Cancer Treatment Program, aka BCCTP.

This is phenomenal news. Now, not every doctor I'm going to be working with takes Medi-Cal, and not every single thing that may need to get done to me is necessarily going to be covered, BUT it seems that a very, very large percentage of it is.

At this point, I'm still learning about the program, and trying to figure out just what it will mean to get "full scope Medi-Cal" during this treatment. As far as I can figure, if full-scope Medi-Cal normally covers it, I get it...and full-scope covers things like dental work. Hmm.....now THAT is intriguing! Hell, if I'm already going through cancer therapy, what's a little major jaw excavation, right? We shall see. All in all, I think I'm still stunned that such a miracle of financial aid exists, and more than a little suspicious that it's all a big hoax, or we just misunderstood, and I'm waiting for someone to pull the rug out from under me.

The bad news to report over the last few days is that frankly, I feel like hell. Or worse. I had to promise myself last night that I would write that on here today. When I started this, it was to keep all y'all informed on my real progress, not just write some faux-pithy cancer travelogue.

So, here it is: I feel TERRIBLE. I am having moderate to severe cramping, and this achingburningstabbingthrobbing pain across the lowest part of my back that is so severe it wakes me up in the night and in the morning.

Until I see the oncologist on Monday, I really don't have any pain management plan in place, meaning no meds, so until then I'm gobbling advil and aleve and hoping not to eat a hole in my stomach. And sleeping a lot...a lot more than I want to be sleeping. I feel guilty for deserting everyone.

I shouldn't feel guilty--Scout mentioned the joke gravestone inscription (we can't remember where we've seen it--Disneyland?) that says "See, I told you I was sick." I have a good reason for feeling like utter crap, but still with the guilt.

And, while my Medi-Cal news should have made me giddy with joy, for some reason I've been unexplainably deeply sad and depressed ever since yesterday afternoon. Sad, near tears, bleh. I have no idea why, maybe just because I'm in so much pain and because I'm tired of being in pain!
So, that is the unvarnished truthful report of how I am doing as of today. Cancer is not any fun, and don't let anyone tell you otherwise. Scout passed along Megan's "Fuck Cancer" coffee mug, and I am deeply honored. She pulled it off, and so will I...I just have to accept that I'm allowed to hate it along the way. Hopefully today is going to be a day of resting and returning email and nothing more stressful than that.

Late breaking update to the continuing "catbox" saga:

New day, new cat, same box.

See?

The Catbox

Once upon a time (I think it was in June) I ordered some knitting needles and a couple of small skeins of wool yarn from a wonderous place called KnitPicks online. My pretty needles came (That's how I spent my birthday money from Dad Irwin--Thanks!!) and they came in a box. It was not a remarkable box, at least not to normal, human eyes.

Cats, however, feel differently. This box, apparently, is magical, with properties that set it apart from all other boxes, no matter how identical they appear from the outside. There is almost always a cat in the box, and not always the same one. Sometimes there is one cat in the box, and one sitting outside the box looking pissed off.

We have experimented a bit. We've tried moving the box. We've tried adding another box, nearly identical in size and shape. No dice. If you move the box, they find it, but they are not amused. If you add another box, you do not get two cats in two boxes-simply the aforementioned one in one out dilemma.

Apparently, this box is now a permanent part of our furniture. I've given thought to trying to make the box blend a bit by covering it with pretty paper, or fabric or something...but I know deep down that if I did, that would invoke the cat-bed curse and they would ignore it forever. Cats do NOT sleep in or on anything that you purposely design, make or buy for them to sleep in . Not never.

I just find this amusing, like an ongoing science experiment, as I watch at least three cats bicker over who gets the box each day. Hey Sue, recognize that itty-bitty-teeny little gray kitten you dropped off at my apartment? He weighs almost 20 lbs now. Oof!

Just killing time before we head off to Paradise. It really is quite a lovely place, assuming it's not on fire, or recovering from just recently having been on fire. Since a large part of the area WAS on fire for a month or two, it'll be really interesting to see what we can see. We may have to make some detours on the way home for taking apocalyptic photos.

Cross those fingers, toes and eyes that this whole financial aid thing works out.

Hopeful...

Today, we are hopeful. Some serious digging and phone calling has been done, and it SEEMS that I'm going to be covered by a government program affliliated with Medi-Cal, just for the treatment of breast or cervical cancer.

Tomorrow, we have to drive up to Paradise to meet a nice woman at the cancer center there, who will get all of my paperwork processed, and hopefully have an indentification number for treatment by mid-afternoon.

We're still not sure exactly which parts of doctor bills and post-surgery treatments would be covered under the program, but it SEEMS that the entire hospital bill would be covered at 100%.

I count no chickens until they are hatched, but right now it appears I should be on a fast track to getting some of this chaos paid for. We'll be getting up early and heading out and hoping for the best. By getting all of this processed tomorrow, thanks to this wonderful person at Feather River Hospital's cancer center, some of my oncology visit on Monday could be covered.

Yay for progress! Had a great visit, and my favorite guitar player left this morning, after he and I completed our de riguer ritual visit to the local diner for a giant, greasy breakfast. Unfortunately, the pain has been pretty horrible today, but help is on the horizon...

I've also been getting lots of emails, and to all of you, thank you, I love you, and I'm working on writing you back just as soon as I can.

Filing Accomplished

I feel so much better now. All things are filed in tidy folders with labels, and lists are being made, notes from doctors' visits are being transcribed, and all is well with the world.

Even more important, the children are in school, and I am home to appreciate it!!! Ah...The Bellyachers are keeping me company while I update calenders and planners and fuss over things. My nap is roughly scheduled for 2 pm, unless my visitor arrives before then.

About the only pressing things on any to-do lists now are just getting notes and materials and of course LISTS ready for the visit to the oncologist on Monday. Otherwise, there probably won't be a hell of a lot to report until then.

I did, however, figure out Twitter, I think. The whole point of that is that I can now update this, in a way, from my phone, wherever I might be, like laying in a hosptial sans computer. Techology is fun.

Today I am relaxed, and in relatively little pain, which makes it a good day. I can spend some time taking care of myself for the next few days.

Scanned. And tired.

Ok, the CT scan was accomplished with little actual pain or discomfort, and in a relatively reasonable amount of time. The chest x-ray took at least 4 times as long as it should have, but it's done. I now have a lovely set of films I could frame for posteriety, assuming I wanted to always remember what my boobs look like on an x-ray. If I had a scanner with a big enough plate I'd scan it and post it up here, just to be perverse.

My very large pile of CT, ultrasound & x-ray films and I will be heading down to the Bay Area on Monday for our first consultation with the oncologist. I won't have time to do any visiting on this trip, since we'll be going down and back in one day, trying to get home to the kids. (It's going to be about a 3 hour+ drive, for those who don't know) I'm sure I'll have a chance to see folks on future visits, but this one will probably be in and out.

So, that's the next step. Until it's time for that appointment, we'll be working on the financial aid side of things, trying to get me enrolled in a program that might actually help offset some of the costs of this monster. We'll see. One step at a time. Right now I am just tired. Tired, tired, tired.

Twitterpated

Now I know what I meant to ask.

Does anyone else out there use Twitter? I've signed up for it and I'm trying to figure out how it works, so if you do it, let me know.

Look at me, learning to use the internet again. I'm well on my way to being almost as much of a geek as I used to be. I'm not sure if that's a good thing or not.

Quick, like a bunny!

Today's theme reflects more Getting Things Done. Quite a few things got Done yesterday, and I'm happy to report that my desk is actually cleaner than it's ever been since it was first assembled. When we were moving in to the house, we got the keys a couple weeks before the movers brought our actual furniture, and were back and forth constantly to take deliveries, set things up, you name it. This desk, the kitchen "mission control," such as it is, was the first piece of actual furniture assembled in the house, and it + 2 cheap folding chairs served as the only place we had to sit and eat while we were up here. From that point on, it's always been a very busy place.

It's waaaaay cleaner than this now!

I have to confess though I got all the cleaning done, I still haven't done my filing. I hate filing. All the medical crapola is neatly stacked in my wire organizer awaiting folders and labels, and the non-medical crapola is stuffed in a hanging file in the file cabinet. Deal with it.

I discovered that being so productive also made me completely exhausted and in pain. Oops. Lloyd and I discussed that I should perhaps be planning time on my schedule for a nap most, if not all, days. If I don't take one in the afternoon, I tend to crash out in the evening. I'm great once I get going on a project, but when I stop, the crash back to earth is pretty brutal. Ouch.

So, today, we're off to Chico for CT scans, xrays and drugs, oh my! Before it's time to go, I have multiple phone calls to make to several different doctors and other randomness to see to. After, I will take a nap. Very exciting, but my visitor is delayed for a day, so he won't be arriving until tomorrow. I suppose I can wait one more day. Lloyd is going with me to Chico, and just in case I have an eensy panic attack in the CT scanner, that would be good.

Hmm...I know I had something else I was going to update on here, but I completely spaced out and forgot what it was! Ah well, the important things are that I feel relatively human today, albeit in some pretty steady lower back and crampy pain, and that I'm going to go get tests done, which make me feel like I'm DOING SOMETHING about this crap instead of just spinning my wheels. It's a start.

I may be slow responding to people's comments and individual emails, but I am getting them, and thank you, very very much!

Getting My Chickens In A Row

Only one duck. And a dog.

Today is all about getting organized! My desk is so overpopulated with coupons and sale ads and takeout menus and office supplies and kids school forms that I can't handle it anymore, and I need to make space for my glorious new career as a cancer patient. Having Cancer (caps intended) is a very busy job, it appears. There is a lot of paperwork and research and material to be organized and tracked and figured out, and I will not get through the ookier parts of it if I don't take the time now while I'm still able to get all this crap filed and sorted and organized so I can keep all of the Having Cancer materials properly organized.

Anyone who knew me before, oh, say 7th grade, would never have dreamed I could grow up to be this anal retentive. Trust me, ask my mother, you'll see.

Physically, I feel far less icky than yesterday, which is nice. I'll have to drink some nasty evil barium suspension tonight to get ready for tomorrow's CT scan, so I need to enjoy my day as much as possible.So, that leaves me organizing life and preparing for a visit tomorrow from my oldest friend in the world, and all-time favorite neato coolo guitar player in the known universe. (And probably some unknown ones too.)

Oh, and I almost forgot. Y'all might have figured out by now that I love the art and humor of Sandra Boynton. When surfing her website and shamelessly stealing things to put on my blog, I found the coolest jewelry in the world. http://www.sandraboynton.com/sboynton/boyntonjewelry.html I was about to race out and order myself a hanging cat necklace or a guardian hippo necklace until I saw the prices, but I thought others might be as entertained looking at them as I was. They are way cute. Maybe I'll get a friendly beast tattoo when this is all over or something.