Ooops...

I think I kinda-sorta owe you guys a blog post, huh?

Yeah....I will have to get around to that, like, immediately.

Tomorrow - immediately tomorrow. ;-p Well, it technically is tomorrow, if you want to get picky about it, but my darling husband is going to get really picky about things if I keep typing while he's trying to sleep.

Having justified a swift return to reading my Chelsea Handler book, which is absolutely fantastically fantastic trash, and I mean that in the best possible way, I'll see you all back here sometime when it's at least light out.

And the CT was good! Ver. 2.0

As most of the universe probably knows by now (thanks to my endless texting, tweeting and Facebook status update), the CT was good. In fact, it was about as good as it could possibly reasonably be.

As with the last one, the nodules in my lungs have not moved, grown or multiplied. Dr. Mazj is of the opinion that some or all of them could be scarring left after the chemo bombardment.

There is no sign of cancer anywhere else in my body that we can see.

My port, the neat little gizmo that lets them deliver the chemo more directly and without destroying my veins, was giving me some trouble, and we were wondering if it had moved, gotten somehow disconnected, or something, so Dr. Mazj had them check that both on the CT and with a catheterogram yesterday. That involved putting me under some nice claustrophobic devices in the cath lab and shooting iodine into the port to look at it on a fluoroscope. So far, so good. We still don't know why it's bugging me, but it's where it should be and still working.

SO, after getting the great news from Dr. Mazj & then getting my port checked out, I sat down for one last hydration session, at least for a while, and then . . . I was set free for the summer, with plans to come back in September for another CT. A summer free of chemo and shots and *everything* icky!!!

But, we should make sure that the important details are clear:

• None of this means I'm cured. I am not cured, and I will not ever be cured.
• Right now, what I am is *stable* - no signs of the disease progressing.
• If I stay stable, right where I am now, for some period of time, maybe years, then I'll be able to say I'm in remission, but I'm not sure how long that will take.
• Any of this could change, at any minute, so I have to be sure to be vigilant about paying attention to my body and any changes or symptoms I might have.
• I am not "well" yet, by any means. I still feel like crap, and chemo side effects can pop up ridiculous amounts of time after therapy has stopped; so I shouldn't worry if I'm still having issues throughout the summer, even if I need to go in and get hydrated every so on. It's going to take time for me to get back to where I was even last December; not to mention where I was before I got cancer.
• The goal for the summer is to try and get back into a "normal" life, whatever in the hell that means, and start getting some strength back, healthy habits and a better ratio of up time to down time.
• However . . . I still have quite a number of other health problems above and beyond the cancer which aren't gone and aren't going anywhere either. I'm not a healthy person, unfortunately.
• And, most importantly:

There are absolutely NO guarantees that the cancer will not pop back up in my lungs, or in some other part of my body. My life span is still a complete unknown. I think I can say that it's longer than a year now, by quite a lot, but there is zero assurance that I will see 70 or 80 - or even 50 or 60.

All I know now is that I've got a chance; a reprieve. Nobody's future is certain, mine is just a little less certain than some peoples' in a lot of ways. Ok, one thing is certain: It's naptime.

More later...after I sleep.

To all of you out there, I love you very much. You are a large part of why I've made it this far.

To friend? Or not to friend? And, Portable Happiness

In the last week or so, I've been getting a bunch of people wanting to befriend me on Facebook. At first I was pretty baffled as to who some of them were, researching them on fb didn't give me any answers.

Those were easy - click the "ignore" button, no concerns involved. It got a little harder when I realized that some of them were actually relatives, albeit relatives who I've not seen or even heard of since I was about 9. As the news of my cancer has spread into the distant parts of my family, I guess more people became interested in seeing what was going on.

Sooooo....I wanted to explain my little "policy" that's sort of evolved. This blog is public. It's meant and expected to be seen by anyone who cares to look and share part of this god-awful journey through the land of cancer. Come one, come all, peek behind the curtain at the freak show! 3 Ring Cervix, you know.

Facebook, however, is not public. I've made a personal decision that Facebook is for ME, as an adult, with my friends. On there, I don't want to be obligated to ask act like a grownup because my kids, grandkids, or whoever are seeing it. I don't want to feel that I have to censor anything I write and want to be 100% comfortable sharing my feelings, my thoughts, and my cancer crap without worrying that the information will be repeated anywhere else, or shared with people that don't even know me. So, with *very* little exception, the only friends I have on fb are people I am friends with and had experiences with out in the real world.

None of this is meant to insult anyone or reflect negative feelings about anyone. It's just that I don't know you. That's all. I want my one little private thing where I can still be the me that I was before I became Cancer Girl and had my whole world turned into one giant medical drama.

So...if you've asked me to be friends on Facebook and I have not accepted, that is the reason. Nothing more, nothing less.

Kind of long to explain, but pretty simple in the end. I figured I'd better explain to the world at large because I HATE hurting anyone's feelings.

OK! On to a happier topic!

I've started working on something to help me through some of the harder times. At first I was

thinking of a picture frame, filled with a collage of pictures of people and things that make me happy. Now it's mutated into something more. I have a stack of these little bitty 4x6 size photo albums that I got at the dollar store for putting recipe cards in, way back when. (Still a fantastic idea to organize all those recipe cards that float around your kitchen!)

I keep thinking of this as nano-scrapbooking. So far, all I've managed to do is start gathering the pictures and snippets of letters and stories that make me happy. It's something very personal, that's really only going to make sense to me, so I don't plan on sharing the actual product with anyone; however, I thought the idea was worth sharing. And we all know lots of people who could use a few more pieces of portable happiness...right?

CT scan was done this morning, despite a last-second worry that I wouldn't make it to the test, thanks to my intestines. I made it through all the barium nastiness, and in theory, we will get the results tomorrow afternoon when we go see Dr. Mazj. I honestly wish you could all be there with me to hold me up when I find out, but I know that my darling husband and the world's world's greatest team of nurses will do a great job.

It's the waiting that will make me insane...

Stay tuned.

Little post, BIG news! (even bigger anxiety?!)

Well, this will be short, because it's post-chemo day, which is the 2nd worst energy-day of my current schedule. The worst is the day after my Neulasta shot, which is therefore going to be tomorrow, the 2nd day after chemo. Or sometimes the day after that, when both the chemo AND Neulasta side effects are hitting me full force at the same time. I'm sure you followed that.

ANYway...some semi major news!

I thought I was having 5 chemo cycles in this current group. The first group was 3 cycles, so I was surprised when Dr. Mazj said 4; and even more surprised when the printed appointment calender I was given showed 5, meaning I wouldn't be finished until the end of June. That would have placed my CT somewhere around the 2nd or 3rd week of July, probably just before the kids leave for Mommy's house.

Surprise! Yesterday was my last chemo session for this group. I was shocked when Roni told me that the other two appointments were mistakes, and that this was it. My CT appointment will be somewhere in the next 2-3 weeks, but I don't have the date yet. I'm going to push to get that appointment scheduled immediately, so that I can plan my life accordingly.

It was actually something of a bonus that yesterday turned out to be my last one, because, for the first time in my history, my labs came back with a white cell count too low for chemo by a full 100 points. Since it was the last one, and since I get the Neulasta white-booster shot today anyway, they went ahead with the treatment. Whew. That would have been a whole ton of wasted driving on Dad's part to come up here and drag me up the mountain twice if they hadn't done the treatment.

But, strange as this will sound to some, finding out that I was done with chemo for a bit is actually the most anxiety-provoking thing that could have happened. When we're doing chemo, we're actively attacking... waiting for the CT...then...waiting for the results...and not knowing what will happen after we get said results..........oh, this is the worst possible. It really is.

Depending on the results, any number of things could happen. We could take a break from chemo - for however long. We could change up the chemo drug regimen. We could move to a "maintenance" program - which could be any number of things.

Basically, god only knows.

And we ALL know how well I do with uncertainty.

Resting time now...

Stop it, stop it, stop it!!

Ok, dear readers, we need to get something cleared up around here.

You, my dear and loyal friends, family, and folks who are just somehow interested in my cancer journey, YOU are my support team through this mess. I can't do it without you.

More and more lately, I'm finding out that all y'all are keeping things from me...negative but important things, so as not to [Please circle one or more choices: upset/ bother/ scare/ anger/ concern/ disturb] me as I fight cancer.

To "protect" me, in a nutshell.

STOP IT!

I am very interested in what's going on in your life, good, bad and indifferent and I am strong enough to handle hearing about the negative parts of your world.

Living up here, away from almost everyone, I'm physically isolated from everyone but my husband and kids most of the time. It gets lonely. I rely on all of you out there more than you know to keep me up on what's happening out there in my family, your families and the world at large.

I don't want to be protected! I want to L I V E the life that I have left, however long it may be, and not have the regret that I wasn't there for so-and-so when [insert crisis] happened, because I didn't know about it until too late.

Hell, I'd be over the moon if every one of you sent me a three-page letter each week telling me everything that had been happening with you. I realize that's pretty impractical; and lord knows I'd never be able to return them all, but MAN would I be in hog-heaven getting to read them.

I know I need to get on here and post more often...It would help if I had something to post about too. Things right now are pretty monotonous most of the time.

This weekend isn't though: Lloyd is heading down south to visit his Pop, brother and sister-in-law down near Pismo Beach. While he's gone, I'll be tasked with taking care of the kids, dogs, cats, bird and fish, and my Daddy will be taking care of me. Daddy and I always have a good time and it will be fantastic to have him up here. He is exceptional company. :-)

SO . . . I need to post more often, so I will think of bright and witty things to say, and you, all of you will please, please stop sheltering me. I'm bald, I look strange, I barf a lot, and I often have tubes or needles sticking out of me, but it's still ME in there, I promise. You can still talk to me as if I'm a totally normal person.

Deal?

XOXOXO Hugs, kisses and lots of love to all of you!

PS-- I think my half-inch long hair is falling out again. ::sigh:: I wish it would just make up its mind!!! :-P

Sometimes, there are miracles.

And usually when you least expect them...

Let's back up a ways so that things make sense. As we all know, I'm in chemo session 2 out of god knows how many to come.

Session 1 seemed to serve to freeze the little fuckers in place - no growth, no multiplication, no nothing - so it made sense to continue with what we were doing to try and keep them that way. It would have been awful nice if they'd disappeared or something, but I don't even hope for miracles of that level.

This week was cycle two, meaning Monday chemo, Tuesday hydration, Neulasta shot and Procrit shot. I'm done with the Venofer or Ferrlecit (iron infusions) for now, unless I need them again.

Last night was pretty horribly gnarly, with the side effects flyin' left and right, and my absolute favorite - an intestinal blockage - taking center stage. I was still so miserable this morning that I had to cancel my appointment with Andy, something I *never* do!

You're starting to wonder about the miracles by now, huh?

Well, the first miracle, thanks in no small part to Lorrie & Andy is that I have Social Security Disability money sitting in my bank account. I'm officially official now!!!! The government recognizes that terminal cancer is rather disabling!

I will get a monthly payment, but at the beginning, I get a retro amount (after paying my lawyer) which will let me get a good start on putting as much money as possible into my mouth.

I will be taking that money to ensure that I do not lose any more teeth in the immediate future. I'm going to do a tiny bit of comparison shopping, and find me a good, compassionate dentist up here who understands that I'm not trying to look like a supermodel; I just want to fill all my cavities and fix all the enamel that chemo has eaten away and get the absolutely necessary crowns or bridges or castles or whatever the hell I need to be able to chew. I do miss chewing.

The second miracle is even more miraculous. Mind-blowing-make-me-cry-miraculous.

The Breast & Cervical Cancer Treatment Program (BCCTP) is a combo state-federal funding deal that has been covering my cancer care thus far. Getting into the program gets you full Medi-Cal coverage for everything related to your cancer. When we first found out about this, we were told that the coverage limits were 18 months for breast cancer and 24 months for cervical.

That would mean that I "expire" in September 2010, which was a rather scary thought, all things considered....BUT, thanks again to the social worker at Feather River Hospital (it was a FRH social worker who got me into the program in the first place - a different social worker, but the same office) we have found out that I qualify for the federal side of the program, which has no limits.

Let's repeat that: It has no limits. I have full medical care coverage for the duration of my cancer, which in my life means, well, my *life*!!!

The only better news I could get about my medical-world would be if my cancer went away. Since I'm not too optimistic about *that* right now, I'll take *this* right now with the most sincere thanks and deepest gratitude there can be.

See, sometimes, there are miracles.

All quiet...

Well guys, I'm happy to report that the past week + has been nice and quiet.

What's new and noteworthy? It's Auntie's birthday!!! That deserves plenty of attention by itself.

So, Happy Hippo Birdie Two Ewe!!

Otherwise...after recovering from my ER trauma, (and updating that pesky medical info in my phone and elsewhere!!) I went and got my first chemo of the new series last Monday. That went fine, with no *major* side effects. It would have been a lot better had I been able to rest in the days following, but that just wasn't to be.

First thing Tuesday morning I went in for a checkup and Pap test with Dr. Davis. I'm not sure how long it's going to be for the results on that to come back on that, but you'll see it here when I do.

Then, after errands and food, we headed back up to Paradise for my post-chemo Neulasta shot and iron infusion.

Wednesday, it was time to go see Andy for my monthly visit. I had a later-day appointment, and when he came out to get me for my turn, I was sound asleep on the couch with Lloyd! I was really tired...

And by Thursday, I was flat out in bed, where I stayed until Saturday, basically!! Either the chemo or the Neulasta hit me really hard with the side effects this time. Massive, deep bone pain and aches all over the body. It hurt to lift a finger...to breathe...at times, I felt like it hurt to even close my eyes! But, laying still most of the time - with heating pad sometimes and icy packs others - and doing some light yoga to stretch out, is the best therapy and pretty much the only thing I could do.

By Saturday, I was a whole lot more comfortable, so I was able to really enjoy my visit with Dawn that night for pizza, movie and conversation; then Sunday, I got to teach her to knit while we waited for our belated-Easter ham dinner to finish up. Thank you Dawn! I know that I'm not the greatest companion these days, since I have to spend so much of my time sitting still, but these visits really make a huge impact in my morale. I don't have many friends who live close enough or are even *able* to come and visit, so I doubly appreciate the ones who can.

Well, it's Monday night now, and I'm back to being seriously achy and miserable...ah well. That's definitely far from the worst I could feel, so I'm not going to complain! Tomorrow is my iron infusion, and then I have the rest of the week to rest and sleep. I think I'm going to go start working on that right now. ;-)

Tomorrow, tomorrow...

...sometimes is too damned far away!!!!!!!!!

You know all those things that you need to do, that you really, really get to one of these days?

Don't wait. Tomorrow is too far away, because you don't know when you'll end up in the ER with an ex-Navy corpsman turned RN trying to get a line into your installed port, no emergency list in Lloyd's phone, NO emergency info in MY phone, which all my daily meds and doses should be kept. Lloyd, a couple nurses, calling Aimee and finally calling Jamie, my fantastic, amazing neighbor who came running over to the ER to bring my Kindle, where there IS a copy of all of this.

The crazy thing is, I SWEAR I had this all set up under control, but it wasn't. I guarantee that I was the most fun that the Gridley ER has seen in a long time!!

All of this started on Thursday, the day I was supposed to start my next chemo series and I just felt like crap. I cancelled, for the first time ever, and felt like hell all day and night. Lloyd was out taking kids back and forth the Grandmas, but when we got home, I actually begged for the ER. I'm not fond of ER visits, so that tells you a lot.

Once they started getting drugs through, my brain started sloooooowly starting to work, and I was able to think of things to help, like calling Aimee (THANK YOU) and He-Jamie, our neighbor across the street, who has the same phone. (and actually a paramedic, I believe!).

When She-Jamie got to the ER with my Kindle, which has a list in it too, we were able to start solving problems. By that time, I had enough IV narcotics in my that I could think enough to realize I was in narc withdrawal because I'd been barfing, and therefore not taking my medicines. This was the breakthrough of the night.

Got me all back up to my proper levels, didn't find anything else on the urinalysis or xrays, and finally I was damn near conscious. I felt bad dragging everyone out in that weather, but Jamie(s) and Aim--you guys save the day.

I will try and write more, and more often later, but right now I'm falling asleep on the computer. My chemo schedule is all whacked up now, so I don't even know when I'm going in to start up. Now I'm going to fall down, with at least 2, but maybe 3 doggies.

When I wake up, I SWEAR I am going to get all of those emergency things up to date. We could have saved at *least* to hours if I'd had my shit with me last night, and not had to drag my amazing, loving friends all over the place.

I'm damned lucky to have all of you!!!!!!!!!!

XOXOXO

And the CT was good!

There are no new nodules.

The nodules that there are have not grown at all since the last scan.

These are very, VERY, VERY good things!

I have a suspicion that I could not have had such a fantastic CT result today without all of you - and your kids, and your pets, custom running shirts, postcards, gifts, photos, email, text messages, bad jokes, good jokes, hand holding, holding me while I cry or while I just need holding, massages, rubbing my back, hats, scarves, thoughts, prayers, Eeyore, Dumbo, flowers, candy... and so many more things I can never think of them all.

So to all of you - my husband, children, father, brother, aunties, uncles, cousins, sons, daughters, nieces, nephews, grandchildren, brothers & sisters (ESPECIALLY sisters!!), by marriage and DECISION; and I was about to say *friends*...but the I realized there probably isn't anyone left who doesn't fit into one of those other categories...

SO, to all of you, from the bottom of my heart, thank you.

All the medical details will be on the blog here, as soon as I can get my head around it.

Right now, I am very, very, very tired, and I need to go lay down for a good long time.

It's that day.

It's results day.

I got three calls from the cancer center yesterday - of course, my heart skipped a few beats with each glance at the caller ID screen.

First, it was my social worker/counselor, checking in on the scheduling of my infusion and dermatology workshop times next week. They'd somehow gotten reversed, so we fixed that.

Next, it was Shirley, one of our case manager nurses (kind of like the stage managers for our endless productions) responding to the message I left with the service asking for another hydration session this week. I don't know why I need so much hydration, because I drink just plenty, but I can always tell when I do, so better to get the good stuff via IV.

Next, it was Shirley again, with the scary call. This was the call where she put on her best calm "nursey" voice and asked if I could come in a bit early today; say, 1:30 instead of 2:00? so we could discuss my test results from the CT on Monday.

It's my theory that, if the results were positive, any number of things could have happened: She could have pulled Dr. Mazj over for a real quick "Hey, don't stress, it looks like the chemo is having some effect;" or said "Don't get all worried, nothing negative to report, he just wants to talk to you about where things are going;" or any number of things designed to inspire the patient to cease having massive panic attacks and/or convey that while the tumors may not have magically disapparated, there was plenty of room for optimism in some small form.

Hell, I'm not asking for anything outrageous - I just want to hear that the assault of poison is doing SOMEthing, aka keeping the little fuckers from growing anymore, even if its not shrinking noticeably. Definitive, measurable shrinkage would be reallllllly nice.......

For now, I take what I can get; I just need to get something positive to work with, please! The fact that cycle 1 made me violently ill wasn't any fun BUT it did make me feel like the chemo was doing something. Cycles 2 & 3 made me sick, but not anything like Cycle 1, which made me utterly paranoid that it wasn't working. Stupid, I know, but you have to admit there's some sort of third-grade type logic in there. Easter, May Day, pick a random pseudo-holiday and I'll be thrilled to have a "We got 'em on the run" kind of result as my holiday gift.

Now back to reality.

I don't really *expect" to hear that though.... Honestly. At this stage, I expect to hear something hopeful and encouraging, that gives us reason to keep on keeping on, that the barfing et al WILL be worth it in the end.....because that's what I need to hear right now.

And, of course, what I DO NOT need to hear, even with Auntie here, and my giant support team in place, are those two very stark, plain little words: "I'm sorry." They tend to echo.

Needless to say, I'm a little stressed out today. I need to spend special time picking out my outfit-- you know, something ultra comfy squishy and relaxing and just right for your average panic attack. Or something like that. Cross your fingers. Off we go!

CT Day

Well, I had my CT, with all the fun, games and adventure that entails.

Now we wait for the results.

Chemo time again!

Well, it's almost time again... tomorrow is chemo cycle 3 of 3 for our first salvo.

Tomorrow will be a pretty long day in the infusion lab, because I'm getting chemo, Ferrlecit (iron) infusion, AND a Procrit shot, which is supposed to stimulate red cell growth.

Friday, a Neulasta shot, to stimulate my white cells, and THEN...two weeks to go nuts stewing in my own juices waiting for the CT scan that will decide everything about my immediate future.

I'm going to assume that I'll be back on chemo pretty immediately after the CT scan, but it's just a matter of how much, when, how long...depending on how the little fuckers are responding to the treatment. Meanwhile, I'm a total ball of anxiety waiting to know. I just want to know that it's doing something. That's all.

I saw Andy Monday, and I saw Dr. Mazj yesterday & had my labs done. Aside from being anemic, despite the two Ferrlecit infusions I've had so far, and "malnourished," according to some other test, all my labs came back great. My white cells are rebounding beautifully, plenty high enough for chemo and anything else; my kidney function is perfect - everything in line where it should be. That is fantastic news, really.

Meanwhile, life lately has been the usual mix of doctor's appointments, tests and feeling pretty crappy, with some days of feeling fairly decent mixed in here and there for variety. I'm looking forward to Daddy coming up tonight so he can take me to chemo tomorrow and give Lloyd a day off. Lloyd and both boys have had massive cases of the latest flu virus going around, and feel like hell, so he can really use a day off! Or 5 or 10... Luckily, Auntie is coming back soon, and that helps everything.

Other than listing the latest doctor visits and such, I just haven't had a lot to say lately. I've been pretty depressed and anxious most of the time, and sleep far too much.

I also found out yesterday that I will very soon be bird-less for the first time in most of my adult life. :'-( My poor little Elvis BooBoo bird, who I never expected to live this long (he was really sickly as a baby) is failing. He's still very sweet, and is snuggling more than he had in a long time, but he's spending all his time on the bottom of the cage, fluffed up and looking sick. I know it's time...my poor little love is almost 14, and that's as old as most cockatiels get. I didn't need anything else to be sad about, but there you have it.

So, not a lot to say...but that's about everything that's going on around here.

I do want to add another big thanks to all my friends & family out there. I have the most fabulous support group there could ever be, and I get encouragement and strength from all of you every day, whether you're visiting, sending me notes, postcards, hats, scarves, or giant boxes of ginger candies. ;-)

I know I'm not keeping up with blogging enough, but it's been hard for me lately. I am going to try to do better - don't I always say that? ;-) But it's the least I can do for that you all do for me. I just want you to know, even if I don't always write back, I do really, really appreciate your effort in writing to me.

Thank you all for being with me. Thank you from the bottom of my heart. I absolutely could not be doing this, going through this deeper, harder therapy without you.

...And I almost forgot to title this post!

I almost forgot to post the picture of me wearing the AMAZING "Russian Princess" hat that Scout & Megan sent me during last year's chemo sessions. I never had an occasion to wear it then, but I finally did this year, when we took Josh & Cheryl to the Sierra Nevada brewery for lunch.

Anyway, just a quick entry to say that the dermatology seminar yesterday got cancelled, sadly, because the doctor was sick, so I'm rescheduled till the 31st.

Dr. Mazj stopped by to visit me during my Ferrlecit (iron supplement) infusion yesterday, and told me that the bumpies on my head are folliculitis, a chemo side effect. Of course they are. Of course.

I've been zonked out today, spending the day in bed, because every post-infusion day is pretty much a lost cause. I am so tired and so physically drained and out of it, all I can do is lay here, but at least I got some writing caught up on. A few more days of freedom to rest, then next week we see Andy, get labs done, Dr. Mazj, chemo.......but Daddy is coming to take me to chemo, and Dawn is coming after that, so I'm looking forward to the visits. :-)

Here's to a few uneventful quiet days ahead...

Shake, rattle and roll!

----I should mention that these blog posts often get started one day and finished several days later, thus making the timelines a bit muddy for the reader. I apologize for that...but hopefully it will still all make sense!----

.................................................................................
Awright, whoever's in charge needs to get their shit in gear. 7.3 or something in Japan, followed by 8.8 in Chile, not to even mention all the "bigger than 90% of normal earthquakes" aftershocks, tsunami warnings.........this is not business as usual--well, unless there's some sort of celestial bowling going on, BUT....

Regardless, I don't think duck-and-cover, as taught in elementary school, is going to work in these cases.

Very nerve-wracking! Sheesh!

Now, where were we?

Ah yes....Day 22 was running errands and getting ready for surgery day. We had it all in line to get the chores and miscellany done on Tues so that we could get up and out for surgery in the morning. Lloyd would take me to surgery, stay till I went in, and then head home to deal with dogs & kids. Dad & Cheryl would drive up to the hospital in order to bring me home from surgery.

But, as usual, life threw us a curve Tuesday night, in the form of a rather large & nasty kidney stone. Not my kidney, Lloyd's kidney!! This is a man who never asks for help, never takes advil unless he's got a near migraine - and then, he takes ONE advil. Anna came running to get me, and he swallowed the rather large, to say the least, dose of painkillers that I handed him without question. That's how I knew he was in serious trouble!

Change of plans time!!!

Unfortunately, as I've learned, the only thing you can do about those things is WAIT, and endure pain that's been described to me as far, far worse than childbirth. Luckily, Lloyd has a wife with a wee bit of medication to make the waiting a bit easier. Even luckier, I had Dad and Auntie coming and we were able to change plans a bit, so that they'd get up here early and Cheryl could go up the mtn with me for surgery and Dad could stay with Lloyd in case something changed and he needed to get to a hospital. I was NOT leaving him alone...

When Dad and Cheryl arrived in the morning, they brought me a big surprise. A 6ft tall surprise! Joshie!!!!! Right on! I haven't seen him since my wedding, but Josh and I grew up like siblings. Having him up here was a fantastic surprise, and made me feel even more confident.

Suddenly, there were competent adults everywhere!!! Whew!! Sometimes, you just need the cavalry to show up at the right time.

Dad stayed here as planned, Josh drove me up the mountain and Cheryl held my hand a lot, both literally and figuratively.

By the time I was home from surgery, the kidney stones seemed to have made their way to the bladder and settled down, meaning that Lloyd's major pain was over. (He actually passed the stone about a week later and it was HUGE by my standards...it was about the size of a large lentil. Bigger than a split pea, smaller than a fresh pea. Ow.)

Day 24, and we're back in the chemo lab. The infusion went very easily, thanks to my newly

installed port! Nothing much to report that night, except for some extreme-exhaustion-driven nodding off at odd moments and my favorite new bit of strangeness, which I call "speaking in tongues."

Explanation - I've always talked in my sleep. I've even held conversations in my sleep, as a number of relatives will attest. Lately, times when I've been exhausted beyond rational explanation, heavily medicated, and pumped full of chemo-poison on top of that, I seem to start talking from within a dream. I can sort of tell that I'm doing it sometimes, and it's strange because it's almost like seeing myself from the outside. I seem fully awake, and talk in a perfectly normal manner, 'cept for the teeny problem that what I'm saying is complete gibberish. Speaking in tongues. ;-P

The strangest thing is, even after getting my Neulasta shot on Friday, which gave me a pretty good wallop last time, overall I didn't have any miserable "tunnel" days this time. None! Sure, I felt icky, I was really tired all the time and had some barfing here and there, but nothing at all like last time was.

Hmm, I hope they remembered to add the chemo meds to the IV bag!! ;-)

Joshie had to go home on Sunday night, but Cheryl stayed until Wednesday, which was fantastic. I'm learning that getting her up here, all to myself, is the greatest! ;-) Muhahahahahaha!

But I cried when she left...even though I know she'll be back in a month.

She is the single greatest thing that happens to this household during all this cancer bullshit - she takes care of me, lets Lloyd take time off, days off if he wants, gives the kids lots of fussing over, cooks dinner that they all love, you name it.

I learned somewhere around the time she was leaving that I now need ANOTHER type of infusion, something called Ferrlecit, which is an iron supplement of some sort or another. Once per week, for 8 weeks. I guess we need to get my red cells moving too. Whatever!! They tell me when to show up, I sit down and they can infuse whatever they want.

Believe it or not, that's pretty much it. The last days of February faded away with very little fanfare. I have some sickness each day - I can count on at least one good puke, a big headache, and a lot of muscle & body aches, no matter what, with two or three additional little side effects thrown in there for fun...........but it's all survivable. I can deal.

Tomorrow, I'll be seeing the dermatologist who volunteers some time at the cancer center, at the Brighter Days program he runs, where we learn more about taking care of our fragile cancer-skin, he gives us amazing free samples, and talks to each of us in turn personally. I can't wait to have him look at this bizarre breakout I'm having on my scalp. It only figures that I shave my head and it looks like I'm a mutant with all these bumps on my scalp. Ah well.

Dermo seminar, then my iron infusion, and then I'm done for the week. Next week is chemo cycle 3, along with allllll kinds of other appointments. Should be a blast. ;-)

A wee bit behind...

Port surgery, chemo, and visitors of the coolest kind have me more than a little behind. S'ok, I'll get it done as soon as I can!

I'm in the nasty days of chemo recovery, and I feel like hell, but Auntie is here, so poor Lloyd isn't stuck with me all by himself.

More soon, but till then, my friend Darcy kicks ass!

I feel like a chihuahua...

...Mostly hairless, rather helpless, so therefore I just get pissy and bad-tempered & snap at people a lot.

Day 17- After my consult with the port surgeon, my next doctor-y thing was to head out to see Andy. That's always a pretty drive out the back roads, and worth the wait involved, to talk to him and Lorrie. It's a doctor visit and a shrink session all at once! Well, at least I come out feeling like it was, because talking to him makes me calmer and gives me a lot to think about.

Day 18- Friday, and yoga time! Ahhhh...... I sat down with Lisa, and explained to her everything that was going on with me physically, so that she could design a practice for that afternoon that fit my immediate needs. We did entirely restorative poses, combined with her working my head, neck and shoulders in some cranio-sacral massage sort of ways, and damned if she didn't get rid of almost all the achies in my neck! The only bad part was that the entire session was over in less than 2 minutes! Ok, it only felt that way, but STILL. I think I was just so deep under (meditating), which I usually am when I'm at her studio, that it was like falling asleep, while the time just whizzed by.

Regardless, Lisa is a HUGE help in managing this beast of a disease - as much as my doctors in many, many respects. I saw her for some private sessions before my very first surgery, to help with pain management and such, and the effects she's had on me are profound. Her role in my cancer fight can't be overstated. I know not everyone fully understands what kinds of things yoga can do; and I know not everyone really "believes" in it, which is fine, but I've learned so much that I am fully confident in saying that it is a VERY powerful TOOL. If I could see her twice a week, I would, and I would probably be a far, far healthier, happier person for it.

As it is, I'm going to be able to do an other 90 minute session like this one before my 3rd & final chemo cycle of this set (before we CT and see what these boogers are doing, and start ANOTHER set of chemo cycles) thanks to a far-too-generous Christmas gift from my father in law (Thanks Pop!!! I love you!). RGD & EJD, thank you again for this one. You guys rock, and I love YOU very much too.

Day 19-20 Sleepover! I got to have a friend come over to play! Dawn came up from the Bay Area Saturday afternoon for a fantastic visit. We didn't do anything special, just had pizza and watched a movie and talked (which was the important part); then got up and went out to brunch and talked some more. Actually, the really important part is that she was here, because my hair was falling out in handfuls, and I REALLY needed one of my friends here for that. Talk about lucky timing!

It is, of course, nothing against my darling husband, but I just needed a friend of the female kind. Poor Lloyd is about as frazzled with my hair loss as I am, but Dawn was able to tell me truthfully when she thought it was time to go for it and shave it all off. Sitting in a restaurant trying to discreetly collect the piles of long hairs gathering on my scarf and shirt and lap was both horrifying and disgusting at the same time!

The best part was just having a friend up to talk to. I swear, I want to have a slumber party, as if I'm 10 again. Maybe I can rent a hotel suite in the Bay Area and shove all the furniture around... Anyway, thank you Dawn, just for being here, and being here to *tell me* what I needed to know. It's fantastic having another cancer survivor to talk to, who I know won't pull any punches, and will tell me the truth.

That said, I better not hear about one more of you getting cancer. NO.

So day 20 ended with my dh and I in the bathroom, hacking with scissors, and then shaving with clippers until I was bald but for my bangs. I thought I'd leave those for a while, to hang out of the hats - but as soon as I got in the shower, they started coming out by the handful, so off then went too.

At least showering is a really fast job now! No shampoo OR conditioner!!

Whether or not bald is beautiful in your book is totally subjective...my head is totally lumpy and scaly from my stupid psoriasis patches...but bald is very definitely COLD!!! It will be nicer once all the stubble falls out & it's smooth, but at least stubble doesn't fall out in giant fluffy waves on the front of your sweater!

Today is day 21. Somehow, it seems like I've been living with this; this label of being "terminal" for 20 days now. It still seems surreal and incomprehensible.

Today, I go in for labs, and pray with all I've got that I have enough happy little neutrophils, the particular white blood cells I need, that they're able to go ahead and chemo me into submission again this week. The biggest fear I have right now is that I WON'T have enough, but I should. Should. Should. Better!!

After I give them blood, we'll go off and entertain ourselves in Paradise for a while and then go see Dr. Mazj so he can tell me what my white count and stats are.

Tomorrow is my "day off" this week, so I can figure out what I need to finish up and get ready before chemo; Weds is my port installation surgery (Hey, Pauline says after I get the port, I'll set off metal detectors! How cool is that?!); Thursday is chemo & Friday is Neulasta. I should be able to do some updates during that time, but I fully expect Sat-Mon or Tues will be full-on misery, deep in the chemo tunnel, where it kills my eyes to even look for the light at the end.

As always, stay tuned, and--

A special note to some of my newer readers: Thanks guys. Having you out there, far-flung, busy adults, taking the time to read the ramblings of someone you knew once upon a time makes me feel good, like I'm really doing something worthwhile. There is a special place in my heart for all of you. For all my readers and friends, really. I never thought I'd be a blogger, because I never had anything interesting to say, or that anyone else would want to read. As I've said, be careful what you ask for.

Much, much post-Valentine's love to you all,

Steph

Playing catch-up

One of my "cancer resolutions" is to be realistic about what I can and can not get done. If I'm realistic, I'm never going to finish writing a nice thoughtful catch-up entry, detailing the horrible days after chemo and all that.

If I wait until I try to do that, it'll be chemo day again, and my "daily diary" concept will be shot all to hell.

So, lets try this: I'll give a general overview of the days from then to now, and then we'll move on and pretend the last couple weeks weren't accidentally skipped. Deal?

Deal...Day 6 was Sunday, and wasn't any fun at all. It was Grammy night, and I missed the show, damn it. I know that I had a headache the night before and I have absolutely no recollection of the early part of the day; and I mean none at all. I just know I spent the evening curled in bed with cold-packs on my head and eyes, leaping up at random intervals to barf. Day 7: ibid

Day 8: Lots of headache still, and I was still bedridden and very thoroughly miserable, but I didn't barf! Yay! I even ate eventually.

Day 9: Didn't feel good, had a severe headache, but didn't feel like total death.

Day 10: Stiiiiilllll got a headache........

Days 11-14 were pretty unremarkable. I've not had a day where I feel "good," per se, but at this point, "unremarkable" isn't a bad thing.

Day 15: Phone appointment with the hospital nutritionist who is trying to help me find food that will a) help me stay alive, b) keep me nourished during chemo and c) hopefully not get barfed right back up.

Now we're current! Yay! Whew!

Day 16, today, was my consultation appointment with the surgeon who's going to put in my port next week. It was a pretty straightforward appointment. He did the usual vital taking, stethoscope-wielding exam, which I will never understand. I guess they need to see kind of what your overall health and fitness is like before they slice you open.

What he'll be installing is one of these little boogers. This little joy of the medical device world allows me to get chemo'd without the nurses having to try and find a vein to run an IV each time. Yes, it's painful, and it's not any fun, and by the end of my chemo period last time, my veins were PISSED.

So, this time, we get a tiny incision to slip this neato little medical device inside my chest where it will get anchored and allow the chemo infusion to be delivered more or less directly, through a big fat central vein.

Less pain and faster infusion time - hell yes! So, a minor surgery, and off we go.

The best news of all is that my dear Auntie is coming to spoil me rotten for a week and help me get through those really, really rough days after chemo, and that in itself makes me feel better.

Tomorrow, I'm off to see Andy, and then Friday, FRIDAY! I've got an appointment with my yoga teacher, Lisa, for an hour and a half of heaven.

Yay, I caught up!

That means I get to go to sleep now. More gory doctor and cancer details tomorrow...

This is what a port actually looks like. The whole thing resides under our skin and the long "string" looking part is the catheter threaded down into the vein. Looks like fun, huh?

A daily diary

INCREDIBLY excitable and happy addendum at bottom, please read!

So, I've been thinking. Well, I've been thinking a LOT, which is not surprising. Way back when I started this blog, I really had no idea what the future would hold. At the time, I never imagined THIS, but I did really plan on trying to make it a daily recording of what it was *really* like for me to go through my fight with cancer, warts and all.

It never quite evolved as far as I thought it would, but I think it's time to try and change that. There is probably someone, somewhere out there who is looking down the barrel of a cancer diagnosis, procrastinating on their yearly Pap tests, or wondering if they should get their daughter a Gardasil vaccination.

This is not to say that it will be elegant or eloquent; at times it may be little more than a day number and a few words. At times it is going to be very ugly, very unpleasant or very graphically T-M-I.

But it will be honest.

There is only one thing I need to ask you all to do. I need everyone who reads this regularly, or even ONCE, to sign up to "follow" the blog. I believe you can follow it anonymously; alternately, sign up as "Lurker12" or something. The point of having followers is basically find-ability. The more followers, as I understand it, the higher it would show up in Blogger searches for blogs about being 38 and fighting cancer.

So, please, sign up for me?

To catch things up to where we are now, I'm going to work on a very brief description of each day up till now, starting with Day 1, January 26, which is the day my heart stopped for a few minutes.

Day 1: Diagnosis day. This is the day everything changed, forever.

Day 2: The scramble...to get ready to enter chemo again, at a dramatically different level than before, to get all those chickens back in a row, and to try and start telling everyone who matters in my life what this horrible thing is that has just happened.

Day 3: My first combo-chemo infusion; a nice long day at the lab, with Aimee providing some nice company. Just like old times! ;-)

Day 4: Dad & Chris up to visit; they drove me up the mountain for my Neulasta shot and some IV hydration, and then home for some tacos and lots of conversation deep in the wee morning hours.

Day 5: Took Dad & Chris out searching the backroads for some of our cool local birdies, and were rewarded with a Bald Eagle, a couple groups of Sandhill Cranes, lots of hawks and lots of assorted ducks, geese & swans. Back down south a bit for a loop around the Sutter Buttes, our little local mtn range and a trip to In'n'Out in Yuba City and then back home. Nap for me and a drive back home for Dad & Chris. I don't think I did much that evening, at least not that I recall.

Ok, that takes us through the first Saturday. Day 6 is when life got ugly, so I'll pick up the catching up post there.

Later.

I need a nap.

---------------

But first! An addendum...or two, to be precise.

1. Some of those very dear people I'm surrounded with have been coming forward with gifts and cash to help me do and enjoy whatever I might want. How wonderful is that?

I just couldn't think of something!!

Now I have, and it's brilliant!!! la-di-da-di-da-da-da

My yoga teacher, Lisa, is a certified massage therapist, in addition to her yoga & wellness credentials AND being an American Medical Association-accredited registered nurse. Put all that together, and she can work with me on both restorative and "fitness" yoga; "repair work" yoga, as I call it; meditation for help in pain control and getting through the worst days, AND give me nummy, nummy massages!

Yay!!

I wonder if she'd come live with me.....

I'm still not sure what the cost on this combo-service will be, but I do know that I'll be able to afford one session with her for each cycle remaining in this first set of chemo treatments.

Can you tell that I'm a little excited about this? And, I have my "extra-Auntie" (who shall remain anonymous) to thank for putting the idea in my head. Huge thanks to RGD & EJD all over again!!! I love you very, very much. (And I remember your full *real* names, too, lol)

2. I would like to ask for some comments on this post please - and in those comments, the names of some of your favorite kids' books. Ones you loved or still do, your kids love now, you name it. The more the merrier. If you have comments about the books, why you love it, great, if not, take a really quick sec, throw me a name of two, and off.

I'd really appreciate it!!

M a s s a g e s . . . . . .

The long-overdue, hardest post ever

This post is far late in coming, but I think you'll all forgive me. It's also going to be fairly short, and to the point, but I think you'll all forgive me that too.

On January 26, I was told that I had been diagnosed with Stage 4 metastatic cervical cancer, which had appeared in the form of small nodules in my lungs. The nodules were observed on my routine quarterly CT scan and biopsied viva needle aspiration of my lungs.

It is more than likely that the cancer cells traveled through the lymphatic system before my cancer surgery in September of 2008, when my pelvic lymph nodes were removed. The tiny nodules in my lungs appeared as early as March of 2009 on CT scans, but were so tiny and scattered in my lungs that it was physically impossible to get a biopsy sample using any procedure available. I was sent for a complete pulmonary function test and many x-rays. In the end, the pulmonologist who read the results said that if they were his lungs, he would not worry about these little specks for even a minute.

So I didn't.

I should have.

I skipped one routine CT cycle because I had to have the surgery in November to repair the vaginal prolapse problem I was having - at the time, the nodules still hadn't multiplied, migrated or grown in any way, so postponing the scan was no biggie at all.

My next CT was the one on January 11, where the nodules were observed to have multiplied and grown. Even so, they were still so small, and so diffused through the lungs that it was very hard for the radiologist to get a biopsy sample. The biopsy was done January 19 and I was told of the results on January 26.

If I chose not to commence treatment of this metastasis, I would have a clinical survival prognosis of 1 year to live. With aggressive treatment, I am likely to have yearS. There is no way to know how many. I began chemo on January 28.

The treatment protocol for this will be 3 cycles of chemotherapy, with each cycle taking 21 days, using a combination of Taxol and Carboplatin; with a Neulasta chaser to help my white blood cells rebound. After each set of 3 cycles, a CT scan will be done to determine how the cancer is reacting to the treatment.

And then we do it again.

And maybe again, and again, and again, and again, and again...........

Lather, rinse, repeat, 'cept this time will quite notably sans hair.

Beyond that, I don't know much of anything.

The one thing we have going in our favor in this is these nodules seem to be very slow-growing, so we may be able to eradicate the fuckers. We may get to a point when there is only one more stubborn one, and they can go in and remove it surgically. Everything is up in the air.

One day at a time, as they say.

All I know is that I'm going to do everything in my power to make sure that I see the date January 26 come around a LOT more times. It's kind of a 2nd birthday for me, of I suspect it's a lot like people who have kicked a drug or alcohol addiction feel about the day they got sober. A celebration of another year still kickin'.

So, the chemo process is started, and it's ugly. These higher-dose/double-dose chemo doses pack one hell of a wallop, and the Neulasta shot, for the white blood cells, has some gnarly side effects TOO, but now that I've suffered through the first round, I know what I can prepare for. Knowledge is power, right?

I know that all of this isn't really happy news....to any of us...... But you can not suddenly start walking on eggshells around me, trying to ignore the 9998lb lime-green elephant in the room. It's here, it's not going anywhere, and it's going to get poked and prodded along the line.

I am still me. I still have a pretty rude, crude, sick, black, morbid sense of humor. I will probably make lots of jokes about dying. I'm allowed. So are you.

You are also allowed to ask me as many and whatever questions you might have. You'll probably have some.

I don't know how many days I have left, but I know how I refuse to waste them - mentally, physically or emotionally.

I admit that I am horrible about talking on the phone, because I just don't *like* it all that much anymore, but I loooooove text messaging (I *might* still be 8 years old somewhere in there), I love talking via email, Facebook & Twitter, and even that good old-fashioned snail mail of cards and letters.

I love hearing what's up in other people's lives more than you can imagine!

I will promise to try my very best to give at least a tiny answer to each! (all communiques accompanied by flowers & See's Soft Centers (nut-fee) candy will of course be given priority......) ;-P

In fact, I'm going to make an effort in between barfing and sleeping to try and have a one-to-one conversation with every one of my Facebook friends (even if it's over by email) and the 2 or 3 other friends or family members I have who aren't on Facebook.

There you have it. You, my friends, are also my family, my personal support network, my rocks, shoulders and ears when I need them, and a hugely important part of my life. Thank you, thank you, thank you for being around.