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