Bummer, man, but only a little bummer

Someone from my homeschool group asked me how I was doing, and if I had any news about my scan. I hadn't seen her for a while, which is why she didn't know. I started crying when I told her. I wish I could talk about my situation without crying. Maybe someday I'll get to that point. Anyway, I'm glad for awesome friends who are willing to talk and give hugs and let me cry on their shoulders.

This whole crazy deal isn't easy. I don't particularly like the hard times, but I'm still going to post about them. I don't think it would be fair to portray my situation as if it were all sunshine and roses, because it sure isn't. Sometimes it really sucks.

But hey. I'm doing what I can, trying to remember to take my vitamins, exercising, chillin' with my family. I have to run today, and it's freaking cold outside but I'm going anyway. We're getting ready for Awesome Christmas Trip to the Florida Keys, and I'm hoping to see some sea turtles and some little crabbies. Trying to keep busy to keep the extreme scanxiety away, you know. ;)

In case I don't wander back here until after the holidays, have a wonderful Christmas!!

It's late

and I should be sleeping. But I can't quit thinking. I popped into the colon club the other day to find out that a member I didn't know very well, but still recognized, had died suddenly. She was only 31, I believe. Of course I felt sad, it's just not fair, you know?

I think it freaked me out some too. More than some. I try so so hard not to worry about the so far unidentifiable spots on my lungs. I'm working on thinking positive, and I do, most of the time, but there's always that Holy Shit thought, that little tiny thought. It hangs around, it won't go away. I almost think this is worse than before, when we knew what was going on inside my body and had a plan that was more than Wait.

So I'm a little weepy about it tonight. And thinking too much. Part of me hates to even write about this because I don't want to freak other people out. Then again, I think it's okay to feel this way, to feel scared, to feel worried. I think it's okay to do some crying.

And tomorrow is a new day, a new chance to love on my kids and my husband and my friends and my family. I feel really lucky for every day I have because some people don't get as many days as I do.

Maybe getting this out will help me get to sleep. Mornings come awfully early around here. :)

I had an appointment to see the wound/ostomy care nurse today. My ostomy looks good, my ass wound looks good. It's all good.

We talked a little bit about the flap rotation surgery. I have to confess, I'm not wild about having another surgery. I don't know. I feel so good now and I'm exercising regularly (and even running!!! crazy!!). How much is another surgery going to set me back? I don't want to deal with healing AGAIN. It sucked so bad the last time. The nurse pointed out that there's nothing wrong with continuing the way I'm going, packing the wound. At this point, largely due to the iodoform gauze, poor Eric only has to pack my ass once a day. It's not interfering with my daily life at ALL.

I don't know. I'm thinking about waiting to meet with a surgeon until after my CT scan in January. So maybe in February? Maybe we'll know more about what's up in my lungs.

The nurse also asked if I wanted to think about an antidepressant because of course, I was crying in her office. I declined. I don't feel the same as I did when I decided to go the Prozac route in the past. If I talk about stupid cancer stuff I'll totally cry, but who the hell wouldn't? The past year or so has been traumatic. I still worry about things. Most of the time though, I feel really good. There are definitely negatives to my friend Prozac.

I think I'd like to get off this roller coaster, please.

Oh hey, I lost two pounds. That's good and awesome.

Continued positive thoughts are appreciated. And I'll try my hardest to think positively as well. Because I have a lot to be very glad about.

One of the things I've been thinking about and struggling with lately has been getting back to myself. Cancer not only takes over your body, it takes over your life. For many months it was cancer, cancer, treatment, cancer, surgery, cancer, scans. In some ways, it never goes away, at least it hasn't for me. Now that treatment is done, I'm living scan to scan. It was like some crazy full time job with double overtime that I wasn't allowed to quit.

And then I got fired.

So now what?

That's what I'm trying to figure out. It's as if I have to build myself back up after being torn down. And it kind of sucks in some ways. This body is different for one thing. No menstral cycle, hot flashes, a lingering spaciness (which I really REALLY don't like), not to mention the physical issues of my guts being different and getting used to an ostomy, sexual issues, tightness in my hips that I can't seem to get stretched out. I've gone through changes in a matter of months that most people get to ease into over a period of years. It's hard.

I'm trying to go with the flow. I'm trying to be gentle with myself. I'm doing what I can to not stress. I'm working on getting healthy, exercise, yoga, eating decently healthfully, taking vitamins, boosting my immune system.

But sometimes I get a little frustrated. Okay, a LOT frustrated. And angry. What the hell kind of karma is this? What am I supposed to be learning? Why did the lesson have to be so so harsh? I'm not really looking for answers to these questions. I think that sometimes people just have bad luck. Maybe it's supposed to make you stronger, maybe it's supposed to help you appreciate what you do have, maybe it's supposed to lead you to doing something greater. I don't know. I think sometimes you don't get to have all the answers. And I don't know that the answers come from people. I think they come from inside, from learning and growing.

Anyway, it's a journey, right? I'm doing the best I can with the knowledge and ability I have. It isn't always easy. In the now, I'll keep working on myself.

My Thankful Post and a little Go Me!

First, the Go Me!

I was out walking/jogging today, and the Black Eyed Peas "Boom Boom Pow" came on Pandora. What a throw back. About a year ago at this time, I was finishing radiation and today, the day before Thanksgiving, I was done with the chemo pump. I can't believe where I've been and how far I've come in a year. If you had asked me two years ago if I thought I could do radiation and chemo, have a major surgry, deal with an ostomy, do more radiation...I would have said, "No way." But I did it. You don't know how strong you are until being strong is the only choice you have. So go me!!!!

Now, my thankful list. It's not all encompassing. I think that would be impossible, and besides, I need to start dinner in about fifteen minutes. So here's 15 minutes worth of thankfulness.

My friends and family, obviously. There's no way I could have done the last year without them.
My husband.
My children.
It may sound weird, but my health. Although I don't know what will happen in the future, right now I feel pretty good.
The weather in GA. I love it!
My new friends, who make living here so awesome.
Our home.
My stocked pantry
The Internets (and all the friends who come with it, especially my Mixed Drinks ladies)
the beach
COFFEE
and soy creamer
Perspective
Music, especially all the songs that speak to me
my recliner, despite being leather, has brought me through nursing two babies and a bunch of cancer treatment
my sewing machine and my serger
fabric
The ability to write as a way to share
Drinking Ice water (those who have done Folfox know what I'm talkin' about)
tempeh
vegetables
farmer's markets
snorkeling
the camera, for capturing both good and not so good moments over the past year
La Leche League, where I've found knowledge and friends
humor
my bed
laughter
my blue Vue
patience
love
Survior
vegan recipes and cookbooks
imagination
my doctors
wound care nurses who have a sense of humor
my man sandels
maternity pants that hide ostomies
time

I could go on, and on, and on. I have a lot to be thankful for.

So now you go. What are you thankful for? Feel free to put your list in my comments, link me to your blog, or just keep your list to yourself. Even if you don't feel like sharing, MAKE A LIST. It will feel good, honest.

Happy Thanksgiving, friends and family!!!

Raise Your Glass

Right right, turn off the lights,
We're gonna lost our minds tonight,
What's the deal, yo?

I love when it's all too much,
5am turn the radio up
Where's the rock and roll?

Party Crasher,
Penny Snatcher,
Call me up if you want gangsta
Don't be fancy, just get dancey
Why so serious?

So raise your glass if you are wrong,
In all the right ways,
All my underdogs,
We will never be never be anything but loud
and nitty gritty dirty little freaks
Won't you come and and come on and raise your glass
Just come on and come on and raise your glass

Slam slam oh hot damn
What part of party don't you understand
Wish you'd just freak out
Can't stop, coming up hot,
I should be locked up right on the spot
It's so on right now

Party Crasher,
Penny Snatcher,
Call me up if you want gangsta
Don't be fancy, just get dancey
Why so serious?

So if you're too school for cool,
And you're treated like a fool,
You can choose to let it go
We can always, we can always,
Party on our own.

All right, I stole these lyrics from Pink. She is just so awesome, and her songs kick ass. Isn't it true, friends, that cancer makes us the ultimate underdogs? Let's try not to be too serious. Let's try to remember and hold on to the things that are going right, even if it's just little things like that your coffee was great this morning or that it's a sunny day (okay, those are mine, you have to get your own). I don't want to boss people around who are suffering...but man, be fucking thankful. There must be something that's right, that's good. Today, I challenge you to find it. Find that one thing.

Your milage may vary on this one, but the experience I have is that if I can find that one thing, I start finding more things. And suddenly life isn't so bad. It's worth a try, right?

And if it doesn't work, there's always prozac! Hahahahahahahaa...oh goodness.

I'm going to spend the day thinking about things that make me thankful and give me joy. And I'll post a list. You do it too. Post a link to your list in the comments because maybe something on your list also belongs on mine.

Bad Days, I haz them

I had a little fall apart last night. It was a lot of things that I've been really trying to just not think about. It was at a totally bad time, too. :( Luckily I have the most patient husband in the world.

I'm even having trouble getting all the crap out on the blog because I'm just so sick of dealing with it all.

I think it boils down to the fact that sometimes I don't like the New Normal.

I miss the old normal when I didn't have an ass wound. I miss the old normal when sex didn't hurt and dialators, what the heck are those?? I miss the old normal when I didn't worry about the results of a CT scan, or worry about whether or not I'll be around to see my kids get big and do great things.

Fuck you, Cancer. You pretty much suck, even when you're not in my body anymore.

I don't know, maybe if I can properly mourn the old normal I can fully get on with the new normal? Maybe I'm just having a bad day?

So many things are going right. So many things completely rock my world. But then there's the shadows, the things I'd rather forget. Or at least things that I don't mind remembering if only they weren't so raw still.

I think it will get to that point, someday. I hope that it will. Until then, I think I might have bad days sometimes. It's okay to have bad days, right? Bad days, I haz them.

And if you have them, that's okay.

I have more good days than bad, and so so much to be happy for and look foward to. Like...
Vegan Thankgsiving!
finishing my NaNoWriMo novel
hanging out with my kids and marveling at how much they learn
spending time with my kick ass husband
Florida Keys, baby!!!
being with friends
Christmas sewing (and just sewing in general)
skyping with family and friends (you don't have skype?? Why not????)

The list is really endless.

Thank you, readers, for walking this journey with me. I always appreciate your thoughts.

There are not many things that are more entertaining than going to see the wound/ostomy nurse here. She is very very nice, and has a lot of things to say. About everything.

First of all, my wound is doing well but since I am more than over even having a rectal wound, I think I'm going to see a plastic surgeon for a consult. There is a procedure called a flap rotation that apparently will fix it. I'm a little worried about any surgery working since my rectal wound didn't heal the first time. So we shall see. Now that we're only changing the dressing once a day (or twice at the most) with the iodoform, it's not such a pain in the ass (haha...that joke never gets old, man).

So the other stuff she said.

The office manager asked me about a flu shot. I told her we don't do flu shots. We chatted a little about my views on vaccines. Then the nurse came out to get me and the office manager said she asked me about flu shots and that I don't get one. First raised eyebrows. Nurse asked me who my oncologist was and said he would probably strongly suggest that I get a flu shot. I piped up and said that I didn't get a flu shot last fall during cancer treatments either. More raised eyebrows. I know, I'm a freaky freak. Suspecting she wasn't going to change my mind, the Nurse dropped it and brought me to the back.

I got a breast exam lecture, which was actually helpful and the first time anyone had been very specific about what I should be feeling for and what to look for, and to suggest that in addition to fondling myself, I should also be paying attention to what my breasts look like.

Then after checking the rectal wound, I asked if she would mind taking a look at my stoma. I have some ouchy skin. She said that was no problem and we chatted about wafers and ways to keep output from leaking under the wafer. Last time she tried to talk me into wearing a belt to give more support to the wafer. Um, no, I'm not wearing a belt. She asked me again today, helpfully telling me that there are lots of different sizes. Still a no, thanks. So her suggestion was to try eating more fiber to make the output more firm. I already eat a goodly amount of fiber, but okay, I can try that.

Oh! Then she asked if I'd like to talk about sex. !! ?? I said, "Um, do YOU want to talk about it?" She said only if I did, so I said, "Sure." So she asked me if I felt uncomfortable with the pouch, which I don't. And she suggested wearing a teddy that is connected at the bottom and that I could buy something from Frederic's of Hollywood. (!!??)

She talked about Beano too, in case I am embarrassed by the gas from the stoma (I'm not).

During the visit, I got the idea that she sees a lot of people who are very uncomfortable and embarrassed by having an ostomy. Although the things she was saying were kind of funny to me, the idea that somone would be so ashamed of an ostomy made me sad. I'm not ashamed, embarrassed, uncomfortable, etc. At all. Does that make me weird? Am I going to get to a point where everything catches up to me and I freak out and start feeling all bad about my ostomy?

I wish I could meet every single one of the people the nurse has worked with who have such awful feelings about their ostomies and give them great big hugs. And I wish I could talk to them and explain why I don't feel bad about mine. My ostomy saved my life. What if there wasn't an option like an ostomy for me? An ostomy isn't so bad, really. I'm not saying that to make myself feel better, I'm saying it because it's true. I still do all the stuff I did before. I keep up with my children and am intimate with my husband and go swimming and walking and whatever I want. Do wacky things happen sometimes? YES. But I've read some pretty wacky stories about poop from people who don't have ostomies.

I don't know, it's just...sad. I think you have to work with what you have. Is it always easy? No. Is it always terrible? NO. Things could be a hell of a lot worse for me than an ostomy. I have a feeling I'm not alone in this.

Big hugs, fellow ostomates. If any of you ever want to chat, leave a comment or email me. I'll talk your ear off about why we rock!

Not the greatest news of all time

Unfortunately. Not all bad, but not all good.

My liver is clear. Yay liver!!

However, there are a couple spots on my lungs. You can bet your ass I started bawling when the PA read that from the CT scan report.

BUT. The way colorectal cancer tends to spread is to the liver first, then the lungs. The doc is hopeful that the spots will turn out to be scar tissue.

The spots are too small for biopsy, so the best we can do is get another CT scan in three months so the doc can take another look. He's also going to look at the images from my Sept 09 PET scan. For some crazy reason, there's no CT scan of my chest from last September. There were chest xrays and the PET, but no CT. So the CT scan we did most recently will be the base line scan.

I spent a good chunk of the day feeling...defeated. Scared. Angry. Sad. Helpless.

Then a helpful and awesome friend pointed out to me that there are lots of things I can do between now and January. I can continue the yoga I do and meditate on being healthy. I can boost my immune system. I can keep working on getting strong through exercise. I can love my family and friends. I can live my life.

She is absolutely right.

Am I still feeling sad and overwhelmed and crappy about all this? Of course. Fuck you, Rectal Cancer and your after affects. You big jerk, you.

But I have a plan and some direction. I have a ton of support and prayers and positive thoughts. I have awesome family and friends.

So yeah. That's the deal right now.

I love Lisa Loeb, but the waiting? Not so much.

Waiting for Wednesday

Waiting for Wednesday, my stomach doesn't hurt enough
pain always is a sign.
Waiting for Wednesday, no proof of mine exists
so I don't have to take it back.

Don't want to show you goodbye
show you goodbye
show you goodbye
show you goodbye

but you're waiting for Wednesday
waiting for Wednesday
waiting for Wednesday, I pray you'll put me on the spot
I do believe you, that you'll love me that you'll leave me

What will I do when you come near to me?
You'll put me on the spot.
You've been doing this a long long time
not that you're better than me,
but that you do it a lot.

Now I'm waiting for Wednesday
Waiting for Wednesday
Waiting for Wednesday
Waiting for Wednesday

I'm gonna show you goodbye
show you goodbye
show you goodbye
show you goodbye

Now I'm waiting for Wednesday,
you're back from out of town
the west looks dry, your mind is clear,
and I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here
to show you goodbye.

and I'm waiting for Wednesday to show you goodbye.


I don't know that the song really describes my situation. I just like it. And I thought it ironic that I, too, am waiting for Wednesday.

The Waiting

It's not as bad as I thought it would be.

I mean, I can tell that I'm more preoccupied than usual. I can tell that I'm more stressed than I have been in a few months. I can tell that I'm not as patient with my family. I can tell that feelings I've been having all along have resurfaced.

However. I've also decided that whatever the scan says, it's not an emergency. Would it be nice to have my results RIGHT NOW THIS SECOND? Of course. Honestly though, what's a week? If my scan is clear, then it's clear (yay!) and if it's not, nothing is going to change much between now and next Wednesday. And we'll deal with whatever we have to next week.

I didn't blog about the CT scan, did I? How about if I do that now? I know you're on pins and needles.

First of all, I drank about a gallon of barium. What? Okay, not a gallon. But I did drink a container Sunday night, then another container Monday morning. And another big glass shortly before my scan. Overkill? I only drank one glass an hour before my scan last year. I picked vanilla flavor. Vanilla smoothie. It sounded slightly better than some of the other choices, which included mixed berry and orange.

The waiting room consisted of people who were easily twenty years older than me. As per usual. You'd think I would be used to this, but it's still so weird.

The nurse had a freakishly hard time finding a vein for the IV and she might have poked my arm twice (I don't know, I was looking away and thinking happy thoughts). I'm not bruising as badly as I was when on chemo, thank goodness for that.

The scan itself was relatively fast and easy. The IV barium they give you makes your whole body feel hot. Kind of like a hot flash. Because that's what I need, MORE hot flashes. Your body passed through a giant donut and you have to hold your breath when the nice voice on the scanner tells you to.

I almost started crying during the scan. Okay, a few tears might have leaked out. There's nothing like having a scan that makes you think really awful thoughts about your life and everything that's been going on over the past year.

Then it was over.

Anyway, I wanted to share some of this for anyone who might be reading and dealing with a bunch of cancer crap. I'm sure my feelings and thoughts are not wholly unique in this situation, and I think it's okay to feel whatever you feel. Sometimes I think about the past year in amazement. I mean, at this time last October, 8am, I was getting ready to go in for radiation. It doesn't seem like any of that was real, it's so weird. It's like I was dropped in some alternate universe for a year, and then dropped back into real life. Did I really do all that?

Feel what you need to feel. Hug people around you that you care about. You know, the same stuff I always tell you to do.

CT Scan tomorrow

That's right, I have one.

Yeah.

It will be my first one since the initial CT scan in September 2009. It will be my first scan since finishing treatment.

I'm a little freaked out.

What if...

You know how those get away with you. I don't like the "what ifs." You can't plan for those. You can't prepare for those. You just have to let it ride until you get the information you need to move on. I wish I was better at letting it ride.

You know what I am pretty good at? Faking it until I make it. So that's what I've been doing, being outwardly positive for myself, for my family. Inside I'm mostly positive. I'd say I'm 75% positive. And 25% negative.

Scanxiety. I has it.

Happy thoughts welcome and very much appreciated.

Interesting Information

At least I found it interesting. I think you all know that one of the hardest things, if not THE hardest thing, about my diagnosis was weaning my son before chemo and radiation started. From the beginning I've been of the opinion that if, after this shit was all over, Eli asked to nurse, I would let him. And if he started back up again, that was fine with me.

He hasn't asked, for the record. He does, however, fondly pat my breasts and say they are His Uns. I asked him once if he missed nursing and he said he did.

I will admit to being concerned about the safety of nursing after undergoing such harsh treatments. Obviously it's not safe to nurse during cancer treatments. But what about afterwards? How long after cancer treatments would one have to wait before nursing?

Well, guess what I have in my hot little hands?? The answers! There is a very cool doctor by the name of Dr. Hale who does great work concerning medications and breastfeeding. He opened a center called InfantRisk Center that is dedicated to providing up-to-date, evidence based, information about medications and breastfeeding. There are people available daily to take calls. How great is that?? Here's a link if you'd like to know more: InfantRisk Center

Some people might say this is not important information. Some people might say that extended breastfeeding doesn't matter that much. Some people didn't understand why it was so heartbreaking to me to wean a 3 year old. That it's a waste of time to encourage a weaned child to go back to the breast. I happen to disagree, and I know I'm not alone. With more and more young women diagnosed with colorectal cancer every year, I think this IS important information.

So here's the deal. I was treated with 5FU, Leucovorin, oxaliplatin, and irinotecan (I alternated FOLFOX and FOLFURI for my 8 treatments after surgery...I know not every oncologist does it that way). An important part of safety of drugs and breastfeeding is how long the drug stays in one's system.
5FU is gone in 24 hours.
Leucovorin is gone in 2 days.
Oxaliplatin binds to red blood cells. It takes about 3 months for the body to replace all red blood cells.
Irinotecan is gone in 28 hours.

Radiation was another concern. From what I could gather, the radiation I received was high energy x-rays. According to InfantRisk, this type of x-ray is just in and out of the body and has no effect on breastfeeding. There are, however, other kinds of radiation, so for your particular situation it would be wise to give InfantRisk a call if you need more information.

So, with that information, I would feel safe nursing at this point.

I don't know what will happen. I don't know that Eli would start nursing again. I do know that this information has made me feel so damn peaceful. It's like knowing I CAN nurse if we choose brings everything around full circle. The hard things I went through somehow seem more worth it. I don't know, it's hard to explain.

And maybe this information will help someone else.

No judgment, I think we all do the best we can with what we know. I wanted to share because I'm so freaking happy about learning this stuff. :)

All right. I found a wound/ostomy nurse who knows what she is doing. She has seen wounds like mine before. She was able to rattle off the name of a recommended colorectal surgeon (if we get to the point that I want to surgically correct the wound). Yay!

So the nurse said things look good. She suggested using a gauze called iodoform packing strips and wants me to try them for a month. Not a problem, we'll do that.

She was also very interested in my ostomy. I don't know if I gave satisfactory answers to her many questions...I don't pay a whole lot of attention to what product I'm using. I'm fortunate to have a husband who is the product expert. And I feel that the product I have is working pretty well for me. It's nice to know that there is someone knowledgeable who can help if I do have questions.

I feel a lot better about things. Dealing with this wound has been stressful. I can't imagine doing it without Eric's help.

Anyway, we'll just keep plugging along. I know that healing this thing will take time. Darn radiation. It was good for shrinking my tumor, not so good for anything else.

The gauze is out!

The missing one, that is. Yeah, freaking FINALLY. And only because Eric is The Awesome.

I pretty much hate my ass wound. I'm tired of dealing with it. Blech.

Our next course of action will be to call a wound/ostomy nurse. And coincidentally, we got one of those packets of advertising that included an ad for a wound/ostomy nurse! How crazy is that? It's a sign that we should call her.

All right, I don't know if it's a sign. But I'll call tomorrow and see when I can get in. My master plan is to see what she thinks about the wound itself, explain how we've been caring for it, and then ask her about some of the ideas that you kind readers have suggested.

If the wound heals as the surgeon suggested it would, I think I still have a bit of time. Perhaps I just need to be patient? I don't know.

I do know I miss the "good old days" when I didn't worry about my body. I get weary worrying about getting enough protein for good healing. I get weary bugging Eric to change my dressing all the time (even though I know he totally doesn't mind, he kicks so much ass). I just am, as I mentioned in my last entry, tired of all this. I feel like my body is a stranger, that it's not mine anymore. It's very hard.

How do you get your body back after something like this? I think I can now empathize with new mothers who complain that they want their body back. It's a crummy feeling. I don't like it.

Deep down I know I will muddle through all this and come out okay. I've gone through a lot of bad times and feelings and come out okay.

So. Another gauze went missing the other day. We still haven't found it. Anyone else think having this ass wound is a pain in the, well, ASS?? I do. I'm so over it. I'm just done. And according to Dr. Eric, it's a freaking cave in there. Isn't this thing supposed to be healing? Everything else on my body heals super fast. Perhaps my ass area is just defective? There was obviously a huge fail with my anus and rectum.

Yeah, not feeling the most positive I've ever felt in my life.

This too shall pass?

Sigh.

Let's Be Real Today

Please take a few minutes to read THIS

Be gentle with yourself today, and I'll try to do the same.

Okay, first of all, MY COLON IS CLEAN!!!!!

I will admit, I wasn't worried about my colon. But still, I'm glad my lack of worry was supported by a doctor sticking a camera into my bowels.

The colon prep was the worst though. And I'm going to tell you about it. So I already yakked about taking the dulcolax. The effects lingered the next day and I was feeling nauseaus, headachey, and dizzy. I took the kids to their art studio class and on the way home puked in a plastic bag. Once at home, I felt a little better, so it was just business as usual, getting the kids ready with things to do while I was pooping, doing a few last minute things.

I started drinking the liquid at around 2pm. The Official Directions tell you to drink 8 oz every 10 minutes until half the jug is gone. I gagged on the third cupful and puked it all up. Gross. So I placed a call to the Stomach Doctor's office, left a message and waited. After 45 minutes of no call back, I decided to try the prep again. There was still quite a bit left. This time I spaced the 8 oz cups out 20 minutes apart. I drank cup #5, then puked again. By this time, it was close to 5pm, but I called the office again. Left another message. No one called me back.

At that point I could have abandoned the entire prep and flaked out on my appointment the next morning, or I could do the prep *I* wanted to do in the first place, my friends Miralax and Gatorade. Eric made a quickie trip to the drug store, and I started the Miralax/Gatorade prep at about 6pm. Much easier. No more puking. And I was able to drink the whole 64 oz.

Now I'm not advocating throwing doctor's orders out the window. I wish I would have been more assertive when I spoke with the doctor. I knew I wouldn't be able to do the Official Prep. I told him I couldn't do it. I know that the Miralax/Gatorade prep works. If my surgeon was okay with me using it, and he is an excellent surgeon and I really respect him, then I'm okay using it. So yeah, listen to your doctors, but don't be afraid to question them and advocate for yourself. I need to get better at following my own advice.

On Colonoscopy Day, we dropped the kids off at a good friend's house and arrived at the office at about 7:15 for my 7:30 appointment. At about 8:30 the receptionist, who must have heard our grumblings about waiting, said there were two doctors doing procedures and mine happened to be backed up. Great. I didn't get called back until about 9:15am.

The nurse asked me a bunch of questions, including if I drank all the prep. I lied. Dr. House would have been proud, haha. My output was greenish clear, no chunkies, I thought I'd be okay. I got my IV for the sedation, spoke to the anesthesiologist, and got wheeled to the procedure room.

The whole "getting wheeled to the procedure room" is the hardest part for me. I remember vividly internally freaking out at that point for my first colonoscopy. I didn't even have a chance to freak out before my surgery because I started loosing it just thinking about it in the prep room. And this time, it was just sucky. There's nothing like laying on a rolling bed (gurney? do they still call them that?) looking up at the lights while someone you don't know rolls you around to just make you think about weird stuff. It's hard to explain. I just hate that part.

In the procedure room, the nurse asked me a few questions then asked me to turn on my side. I was all, "Why??" and she was all, "So we can do your colonoscopy." And I explained about my ostomy, and the nurse looked kind of freaked out. I take it they don't deal with a lot of ostomates there? She apologized, and I said, "It's not a big deal, I just wanted to make sure no one tried sticking anything in my butt, because you won't get very far, I don't have a rectum." So then, flustered, she asked to see my ostomy and I showed her. I don't really get why it was a big deal. She didn't even want to touch it. Sigh.

Then the anesthesiologist asked me to turn over and I had to explain again. This time the doctor was in the room and he chimed in too. Then he asked me if the ostomy was permenant.

YES. It's permenant. Did ya read my file??? I was nice though, and explained that the tumor was too close to the anal junction, blah blah blah.

So the anesthesiologist started the sedation and told me to think of a good dream. Do you even dream when you're under sedation? I thought that was weird.

And when I woke up, Eric was in the recovery room. We got a printout with some cool pictures of my colon. And guess what?? The paper said, "During the procedure we found the following: previous anterior resection of the anus, rectum, and sigmoid colon." REALLY???? Holy shit, guys, someone resected my colon!!!! Eric and I got a good laugh out of that. After speaking to the doctor, I was released. The nurses made me ride in a wheelchair to my car. I guess they have to do that.

According to this doctor, I don't need another colonoscopy for five years. Even though I had a gut feeling (haha) that my colon was clean, I don't know if I trust it quite that much. I believe the surgeon suggested every two years after this initial colonoscopy, so I think I'll check with the oncologist and see what he says. But most likely I'll go in two years. With the Miralax/Gatorade prep.

I wanted to thank everyone for their positive thoughts. I appreciate it always.

Next milestone...CT Scan and follow up oncology visit. This is the one I'm nervous about. I feel like if I can get past this scan and it's clean, then I'm golden. I don't know that for sure, of course, but you know.

WARNING: GROSS OSTOMY STORY

C'mon, fess up. Who among you hoped and prayed for a gross ostomy story from me someday? You know you want it.

In the event that you really don't want it, you might want to skip this post. I'm just sayin'.


So. I have a colonoscopy on Thursday. The Stomach Doctor does things a little differently than my surgeon, and one of the things I had to do to prep was take 4 Dulcolax tabs last night. I'm all, yeah, whatever. I took them around 9pm and went to sleep around 11pm. I woke up at about 2am with the worst gut cramps ever. I mean, that I've had in a long time. Then my ostomy started outputting.

At first it was the mashy stuff I ususally get. Okay, not a big deal. THEN it got more liquidy and disgusting, filling up the pouch really fast. It's a good thing I didn't fall back to sleep at any point while this was happening or I would have had a collossal mess. At one point (gross, gross!!!!) I couldn't get my pouch snapped back on the wafer and poop was just pouring out. Don't worry about the cleanliness of my bathroom floor, I have really good pooping aim. So I'm standing in the bathroom at 3am and it was a poop nightmare. Ugh.

It eventually slowed way down and I was able to clean up and go back to bed. But geez. I had no idea THAT would happen. I'm not sure what I thought would happen, but it wasn't that. Stupid laxatives. Do you think that because I don't eat a Standard American Diet (ie...I eat lots of beans and veggies, not a whole ton of crap) the laxatives worked super super well? Or had an easier time working? I don't know, but man, it was crazy.

Most of the time I actually like my ostomy. It cuts the bathroom time way down. But in the event that ridiculous amounts of poop come out, it's kind of sucky. I should take a picture of the pouch I'll be using for the real part of the colon prep.

Anyway, it was probably way more gross of a story if you were actually there with me.

Expect an update about colon prep, and of course the results of the colonoscopy!

I'm such a Negative Nelly

Because the appointment was just fine. The doctor didn't say anything lame. He actually told me that he had three other patients this year in their 20s with colorectal cancer, also with no family history. Crazy, huh? Kind of makes you wonder what the heck is going on.

Then again, before *I* had cancer, I didn't really think about other people having it. Now when I hear so-and-so has cancer, I wonder what kind and immediately empathize with their situation. I would really like to never hear stories of people with cancer again, but you can't always have what you want, right? It's just sad that it affects so many people.

Anyway, Colonoscopy Day is coming up soon! I suppose it's better to just get that over and done. The Stomach Doctor wants me to do a much more intense (ie CRAZY) colon prep than my surgeon ever had me do. And he wants me to use the crappy moviprep in the monstor jug instead of miralax and gatorade. Booooooooo. I tried explaining that I don't like moviprep, and he kept saying, "Well, if it doesn't work you can use the miralax." I was all, "It's not that it doesn't work, it's that I hate it with the fire of a thousand suns." Okay, I didn't say that, but I did express displeasure. Then he explained that the moviprep cleans you out better and the colonoscopy results will be better. Blah blah blah.

I get it. I just don't like it.

Eric ordered me some special ostomy supplies for the big clean out. Good times.

I'm not super worried about my colon. It was clean (aside from the cancer in my rectum) before. I think the colonoscopy will be okay.

As much as I'm bitching about getting a colonoscopy though, it's not that bad, and it's important to keep tabs on what's happening in your ass. Don't be afraid of the colonoscopy! As always, if you suspect something isn't right with your ass, get thee to a doctor, ASAP. I may be bossy, but it's because I care.

I have an appointment tomorrow afternoon with the doctor who will (most likely, unless I really hate him or something) be doing my colonoscopy. Stomach Doctor, remember?

Sigh.

I don't want to go. I'm tired of doctors and feeling really cranky about going to ANOTHER one. It's likely I'll have to, yet AGAIN, tell him the whole lame-o story about how I had rectal cancer, blah blah blah. And then he'll say something completely boring like, "You're so young!"

See? Cranky.

I know, I know. That's what I get for moving and having to gather up new doctors.

I don't think I'm cranky just because of the new doctor factor though. I'm just sick of doctors. I'm sick of dealing with all this shitty stuff. I feel FINE.

And maybe I don't want to know if my guts aren't really fine. Because that's just going to mean more freaking doctors, isn't it?

Think positive, my guts ARE fine.

I'm trying, I really am. I suspect everyone gets to a point where they are done, and I'm at the burnt crispy done point right now.

My Cancerversary...yay?

One year ago today, I received a phone call that changed not only my life, but the lives of people around me. One year ago today my doctor told me I had rectal cancer. And he didn't stop there. He laid it all on me, the radiation and chemo, the surgery, the ostomy, more chemo. At the time, of course, it was overwhelming, but looking back, I'm so glad he didn't mince words and make it pretty. It wasn't pretty and I don't think putting a bow on this package would have helped things at all.

So. A lot has happened over the past year. A friend recently asked me how I'm doing, emotionally. Mentally. Most of the time I just feel normal. When I really sit down and think about things, I still feel shell shocked. Sometimes I feel angry that this happened. Sometimes I feel peaceful. It seems the stew of emotions simmers away, and different feelings bubble up from time to time. I suspect that's normal. I'm proud that I was able to hold it together (most of the time) and get through what I needed to do to be healthy again.

I feel changed. If that makes sense.

In my life now, I'm trying to bounce back but with a twist. I'm trying to be more patient with people, more understanding. I'm trying to enjoy the minutes, hours, days. I'm trying not to let the little things get me down too much. Am I always successful? Of course not. Life is a work in progress, and I get to make mistakes too.

I'm trying to be open about my cancer and my ostomy and hoping that it helps others. I certainly can't tell people how to handle their own situations, but I can share how I handled mine. Or at times, how I didn't handle it. There were many tears of frustration, sadness, and loss this year. I mostly cried at night in the arms of my husband so I wouldn't upset my children, my family, my friends. It's okay to mourn the life I had before. But it's also okay to embrace the life I have now.

I got to meet some amazing people along this journey. My doctors. The wound ostomy care nurses. I found out that I have amazing friends, friends who are family. I found out the strength of people around me, strength of my family, strength of my husband. I saw the resiliency of my children.

So yeah. My cancerversary. I'm thankful that I get to wake up and enjoy life. I'm hopeful for the future, as scary as the unknown is sometimes.

Go give people you care about a big hug today. I know I will.

Hey, you! Yes you!!

Did you know that not everyone knows what an ostomy is? Did you know that some people think ostomies are gross or dirty and look down on ostomates? There are people who hide the fact that they have an ostomy because they are afraid people won't look at them the same or won't want to be friends with them.



Really?



Perhaps I live in my own little happy happy joy joy bubble, but this shocks me and makes me kind of sad. I didn't know what an ostomy was a year ago, so I suppose anything can happen. Now that I do know what an ostomy is, and now that I have one, I'm pretty open about them. I really hope this blog helps other ostomates to know that there are others out there, and that you can just live life with an ostomy.



I'm an ostomy ambassador. You can be one too. First, read this: http://uncoverostomy.com/blog/2010/9/1/be-an-ostomy-ambassador.html



After you get done reading that, if you want to be an ostomy ambassador too, post a link to my blog. That's the easiest thing you can do. Then, if you'd like to be more involved, share what you've learned here about ostomies. Share my story. If you feel comfortable doing so, feel free to talk about me and my experiences, and what you've learned reading this blog. Let's get people talking. Ostomies are not scary or dirty or disgusting. They're different, but that's not a bad thing.

And on this blog, I'll make an effort to talk more about my own ostomy. Because overall, it's not been too bad. Is it a pain in the ass (belly?) sometimes? Sure. But you know what? There were a lot of times that my own ass was a pain in the ass! Who doesn't have issues with where their output leaves their body once in a while?

Thanks for helping, everyone. Do what you can, what you feel comfortable doing. I appreciate it, as do all the other ostomates out there.

Makin' Butt Kombucha

Attention! Attention! The missing gauze has been found and recovered from my ass!

That's right, it was in there, I freaking KNEW it was still in there. It just goes to show that I know my own ass better than anyone else. Now I hope my poor ass wound will stop bleeding and stinking and dribbling nasty discharge.

This is all pretty gross, huh? Well, wounds are gross.

But the gauze was found! Whoohoooooo!

And the wound doctor found...

absolutely nothing.

I have no freaking idea where that missing piece of gauze went, but the doctor that took a look couldn't find anything. The suspicion is that all the messing we did with the wound last night trying to find the missing gauze ourselves irritated it and caused the resulting juiciness (sorry for being gross).

While nice, the wound people here weren't all that helpful in my not so humble opinion. The doctor was all, "We don't even know if this wound will heal" which of course made me really super sad. :( However, my surgeon and all the wound care nurses in WI were sure that it would heal, eventually. I kind of think the doc I saw today was planting a seed so we'll want to try the hyperbolic chamber (or whatever the hell it's called, the oxygen tank). Blah.

It seems that they don't deal with my kind of wound very often and they suggested I go to my primary doctor and have him follow my treatment. I can't figure out why it would be better to have a doctor who doesn't look at wounds all day long deal with my wound. I suppose I have the option to check out other wound care facilities in the area, most of the hospitals here have them.

I'm just so weary of dealing with all this. I get tired of telling the story EVERY single time I see a doctor. Ugh.

I guess it's good that the doc didn't see anything up in my ass. The nurse encouraged us to keep a wound diary, writing down how many pieces of gauze we put in and at what time, and then making note of how many we take out. I'm sure this would be great if we were using MORE THAN ONE PIECE OF GAUZE. Sorry wound nurse, I'm not keeping a wound diary. I have enough to do, thanks.

I'm feeling cranky about all this, can you tell? Sigh. I'll feel better about it tomorrow, or the next day. I keep threatening to take some pain pills even though I don't *need* them. That's pretty bad, huh? And I won't. I liked the vicodin waaaaaay too much to start taking it recreationally. That's just not smart, and it's not who I want to be, it's not what I want my kids to see.

Don't worry about me, okay? I think we all have bad days when we just want to forget everything, even if we don't have cancer. This is just one of those crappy days.

There's plenty of good going on too, which if you're reading my other blog you know. My little girl is starting to read, really read. My son is counting like crazy, starting to learn his letters. It's all very exciting. I'm loving Georgia. I'm loving my husband and feel so lucky to be with him. We have a couple trips planned.

Just a bad day. I'm thinking positive that tomorrow will be better. Hugs.

Wound Care Update!!

So I called a wound care clinic and talked to a receptionist. She was very nice, and when I explained that I'd like an appointment within the next day or two because I suspect there's gauze stuck up in my butt, she was all, "Oh bless your heart!" Awwww. People in the south are so nice.

Anyhoo. I'm waiting for a call and hopefully I'll get in today because, and this is pretty gross, the wound is more juicy than normal. So I think the mystery gauze is in there somewhere. Sad face. :(

Well, I guess it's about time to find a wound care nurse. Aside from the fact that I haven't had my wound looked at by a professional since June, yesterday we had the Case of the Missing Gauze. That's right, a whole piece of gauze is unaccounted for and I have no idea what might have happened. Eric couldn't find it last night, I didn't take it out, and I don't think it could have fallen out. Could it? I don't know.

I was really upset about the whole thing last night, not so much that gauze is apparently lost in my ass wound, but just about everything. Sometimes I get really mad and frustrated that I'm dealing with any of this. That I have this blog. That my ass wound won't heal. That I have to have a colonoscopy years before normal people. That I'll have a CT Scan in October. It's just not fair, and last night I had a pity party complete with angry tears.

Today? Eh. After all the shit I've gone through in the past year, not much surprises me anymore. And it is past time to find a wound care nurse. So today I'll call around and try to get an appointment for today or tomorrow. Eric is positive he can't see any gauze in there, but I'm paranoid that left-in guaze will cause a raging infection and goodness knows I don't need that.

I'll keep you posted. I know you're now on the edge of your seat to find out what happens in the Case of the Missing Gauze. Heh.

How to Make a Beautiful Life

Love yourself.
Make peace with who you are and where you are in this moment in time.
Listen to your heart.
If you can't hear what it's saying in this noisy world,
Make Time for yourself.
Enjoy your own company.
Let your mind wander among the stars.
Try.
Take chances.
Make mistakes.
Life can be messy and confusing at times,
but it's also full of surprises.
The next rock in your path might be a stepping stone.
Be happy.
When you don't have what you want, want what you have.
Make do.
That's a well-kept secret of contentment.
There aren't any shortcuts to tomorrow.
You have to make your own way.
To know where you're going if only a part of it.
You need to know where you've been, too.
And if you ever get lost, don't worry.
The people who love you will find you.
Count on it.
Life isn't days and years.
It's what you do with time and with all the goodness and grace that's inside you.
Make a beautiful life...
the kind of life you deserve.


These words aren't mine...they came from a birthday card I received from my second set of parents, my mother and father-in-law. I appreciated reading them in July, and I appreciated re-reading them so much today that I wanted to share. I hope my dear friends and family are making beautiful lives for themselves. I know I'm going to do my best to do it for myself every day.

Well hey, Ostomates!

And everyone else too. ;) Check this video out, it's all about living with an ostomy.

www.ostomy.org/living_with_an_ostomy.shtml

Enjoy!

And the appointment is over!

Actually it was over this morning, but we've had a crazy busy day. Right after the appointment we had to rush to get Eric to work, then rush to a homeschool potluck. Then right after we got home, the kids did school-y things and I prepped for dinner (pizza!!!). The house didn't get cleaned up, but I suppose the mess isn't going anywhere. Am I right?

We arrived at the clinic early, since it was my first appointment. Right away at the door we were met with a big ol' sign that said "No Kids Under 16." I could go off on a rant about how stupid I think this is, but I won't. Needless to say I was disappointed because the kids have been to so many of my appointments, and thus far it's been no trouble. I ended up going to the appointment alone (sad face) while Eric and the kids took a field trip to the Burger King Play Area. I don't know what we'll do next time, maybe we'll just storm right past Cranky Man at the Desk and let him find an administrator to chase us. Heh.

The cancer center here is a busy place. I didn't like being there. I think I will forever have an aversion to clinics. After my paperwork was done, I was called back by a very nice nurse. She seemed happy that I'm not taking eighty billion medications, have not had any heart attacks or strokes, and have both my kidneys. I'm guessing I'm not their typical patient. She instructed me to put on a hospital gown, and then I waited. And listened to a woman complain about a rash in the next exam room. And complained on twitter and facebook about the waiting.

So my new oncologist, who will be referred to as The New Oncologist from now on, was pretty nice. He hadn't read my file, and kept saying how young I was and asking if I had cancer in my family. We chatted about how I was diagnosed and my treatment, I blanked out on the Fry Doctor's name, and he paged through my file. He examined me, commenting that I had a very nice ostomy pouch. The nurse agreed, saying it was nicer than the see through ones. Haha. And then we made plans for the next steps.

I know this is what everyone has been waiting for! In a month, I'll meet with a "stomach doctor." That's what The New Oncologist referred to him as, the "stomach doctor." There's probably a fancy name that I'm sure Stomach Doctor would prefer we use, but oh well. Sometime after that consultation, I'll have a colonoscopy (oh joy). In two months, I'm scheduled for a CT Scan, and a week after that I'll be back in The New Oncologist's office to talk about the results. Positive thoughts that we have absolutely nothing to talk about!

It wasn't a good feeling to be back at a cancer center. I was sad that Eric and the kids weren't with me. I was sad that I am dealing with this at all. I'm glad that I can forget about it all again for another month.

Thank you for all the kind words and positive thoughts this morning (and always). It means a lot to me, although I have to remember NOT to check facebook too much when I'm at the appointment, because I couldn't find any kleenexes (what??) in the exam room. Big hugs, everyone!

So. I'm trying not to think about my appointment tomorrow morning. At least it's early so I won't obsess all day long.

I really don't want to go. I just want everything to be done. I don't want to see any more doctors, have any more scans, talk about cancer anymore. Because if I don't talk about it, it's just gone, no chance at all that a scan will turn up something somewhere else. Right? We close the book and it's just done.

I rationally realize that it doesn't work that way. I'm mostly okay with scans and doctor visits. I get that it's something I'll need to do for a while.

No worries, I won't skip out on anything. I don't think Eric would let me and I honestly wouldn't let myself. I have kids, yo.

I'll update after the appointment. Well, at some time during the day. We have some homeschooling stuff to do.

*crickets*

Sorry about the lack of posting here. I think, as I shared with a friend today, that I needed a little space from the whole cancer thing. I didn't want to think about it for a little while. Did I mention here that I'm off all my pills, Prozac included? It's just better if I don't think too much about everything that happened because I tend to get overwhelmed by it all. Yes, still. But in weighing continuing the antidepressants vs. dealing with shit, I decided to deal with shit. Don't get me wrong, the happy pills have their place and are quite useful. I just don't want to use them anymore.

So. Next Monday I have an appt with my new oncologist. After that we should know more about scans and such, when and how often. In the meantime, I have a thick stack of paperwork to fill out. A lot of the questions look familiar...isn't all this stuff in my records SOMEWHERE? Whine whine. I get annoyed by having to answer the same lame-o questions more than once, and some of these I swear I've seen ten times in the past year. Doctors and their paperwork, sigh.

A little tidbit for the ladies who are dealing with radiation (if you don't want to read about vaginas, skip this section!!!!)...keep up with those dilators. Or the sexin'. Whatever method you're using to keep your vaginal canal from closing in from the radiating. Because I now can tell you that a pap/pelvic exam will hurt like a banshee if you don't. And except for the few months after surgery, I have been dilating diligently. I can't imagine doing a pap/pelvic if I hadn't been using the dilators. If you're new to the party, get yourself to colonclub.com and get some info about side effects of pelvic radiation, or go back through my blog and read what I wrote. Or you can just leave me a comment with some contact info and I'll help you the best that I can. Let's share the info!!

Okay, vagina talk done.

That's about it, I guess. Mostly I'm just living life, chasing after my kids, lovin' on my husband, trying to lose the weight I gained back after chemo ended...the usual. It's nice to be back to business as usual (for the most part...still dealing with the ass wound). I'm feeling content with being able to take care of my family again. If someone saw me right now or met me for the first time, they wouldn't even know that I had cancer. After all I went through, that's amazing to me.

Just in case you'd like to see what "business as usual" means for me, here's a link to my new blog: www.lovinlivinandlearnin.blogspot.com Feel free to come hang out with me there and get to know my kick ass husband and wonderful children.

So I met one of the doctors in the family practice we'll be using (or hopefully NOT using...stay healthy, Jahners!). I was supposed to see the female doc (it's a husband and wife practice) but she got tied up at the hospital. One of the goals of my appointment was to get a pap and pelvic, but I decided I'd rather have a woman for that. If he wanted to examine my ass, yeah, sure, whatever. Lots of people have seen my ass. But we did end up talking about my other reason for the appointment, which was to be directed to an oncologist. He did have one in mind to recommend. We talked a little about my experience and I started to get emotional. Then he asked me about the kids and I lost it.

He handed me the kleenex and said some comforting words and then offered to pray for me. I always appreciate positive thoughts and prayers, so that was nice.

The last thing I expected to do was get emotional at this point. I mean, I'm freaking DONE, right? I guess there will be a scan here and there, and random appointments to see the oncologist. It seems the feelings one has during cancer treatment linger after it's all done. I don't know why I thought they wouldn't. And how ironic, today I threw out the rest of my prozac prescription.

Overall, I think I'm okay. The whole doctor's office thing was like an unwanted flashback. I haven't seen a doctor (aside from a couple wound care check ups) since the surgeon removed the port. I don't know.

Anyway I'll be going back for the pap and pelvic with the lady doctor this weekend. Fun, fun. I'm a little nervous about sticking anything but dialators up there, but I'm sure it will be fine.

I did yoga today. I know, I know, what's the big fuckin' deal? I haven't done yoga since January 5th, 2010, the day before my surgery. Wait...I might have done it the morning of my surgery. I can't remember. Anyway, it's been a long time.

It's been a long time for many reasons. Some of them physical, some of them mental. Physically, the ass wound kept me from doing a whole lot of things. I'm almost completely pain free now (yay!!), but for the longest freaking time the pain kept me from doing much of anything. Mentally, yoga was something I did to center myself, to calm down, to relax. Doing the yoga DVD brings back a lot of memories and thoughts I had during treatment. I don't like it. I don't like to think a lot about treatment, about how hard I had to fight. Maybe I need to switch to a different DVD?

At any rate, it felt good. I'm soooooooo inflexible though. Yikes. The nice lady on the DVD keeps telling me that I should focus on the here and now. Don't worry about what I used to do. It's important for me to hear that. When I'm working with a post cancer body, I get frustrated because I'm not at the point I was. It will happen though, I think. I'll get stronger, I'll be able to do all the things I used to do and then some.

I was talking to some friends about my experience, and they were shocked that it hasn't even been a full year since diagnosis. All the things that happened took place in the span of nine months. It is shocking, when I think about it. How did all that happen in such a short time? It really is overwhelming at times, when it all comes rushing into my head.

And now what? Well, I'll be seeing a family doctor on Wednesday. Hopefully she will be awesome, and will have the hook up to an awesome oncologist. One of these days I should go find the wound care nurses for my ass wound. Probably a quickie CT scan in the fall as well as a colonoscopy. So the adventure isn't over, it's just sort of in limbo right now.

How am I? I'm hanging in there. I take no pills except B12 and vitamin D. That's right, people. No pain pills. No sleeping pills. No prozac. It feels wonderful to NOT need all those pills. I don't think about cancer very much, only sometimes. Life is good.

Cancer, you are not fair

Seriously, why don't murderers and child molesters and puppy kickers get cancer? Why do mothers, daughters, granddaughters, fathers, sons, grandfathers...why do they have to draw the cancer card out of the deck of life? It makes no sense. Why does this happen to good people? Why does it happen to people who are helping others, who are raising children, people this world really needs.

I'm not wishing cancer on ANYONE, by the way. I wouldn't. Not on my worst enemy. Not on anyone. It's just not fair that a mother of children would have to hear the words, "You have cancer."

I wish I could say that I'm not scared for myself anymore. I wish I could say that it's all behind me and I'll just forget about it. Sadly, I can't. There's always that nagging in the very back of my mind, telling me that maybe my liver has spots. Maybe something got into one of my lungs. Please don't try to tell me it won't happen. I *know* the odds are on my side with recurrance. I KNOW that. Knowing doesn't help my mind not go there.

Could I even do more chemo? Could I deal with another surgery? I hope I never have to be tested that way.

Big hugs to my sisters and brothers in cancer. It seems we all could use a big hug today.

Update from the road

Some things:

1.) I think I have an appliance that works with my stoma! Any wear time longer than 24 hours is good for me, man. The samples given to me by the awesome wound care nurse rock except the pouches are drainable (which for you noobs means there's a clip at the bottom). I'm not a big fan of the drainable pouches because they are longer than my one use pouches and peek out from under the longest of my shirts. That is so not cool. New pouches can easily be ordered after we get to our new place.

2.) Swimming! I went swimming for the first time since becoming an ostomate. It was uneventful, thank goodness. I don't know what I was worried about. My normal swimming suit covers my ostomy well, so I don't even think you can see it. I'm glad swimming is so easy because I think I'll be doing a lot of it.

3.) My ass wound might be tricky with the swimming. I feel like I need to change it after getting out of the pool, and if my Head Ass Packer (aka Eric) isn't around, that won't happen. We'll figure something out.

That's really about it. New blog that is NOT cancer focused will be here: http://lovinlivinandlearnin.blogspot.com/

I'll continue the cancer related updates here. And ostomy stuff too. The plan for you forward thinkers is to find a family doc, get a referral to an oncologist, and get a CT scan and colonoscopy in the fall. Good times, good times. I'm thinking this blog might get slow, but check me out on the new one!

Goodbyes

How can you feel so excited and happy but also so sad? I'm thrilled that we're finally going to be living in the south, it's going to be warm there, it's going to be an adventure. But saying goodbye to friends...friends who have seen me through stupid fucking cancer, friends who have seen me at my worst, friends who like me for who I am. I knew it would be hard. It just hit me today though, and I'm feeling sad. I'm a firm believer that what you feel is okay, so it's okay for me to have such opposing feelings about moving.

It took so long for me to find my tribe, to find my people, to find a community. In some ways, it might be easier in Georgia...my kids are older, I'm more confident in myself and my mothering. I'm more willing to be outgoing, to talk to other moms. I've learned so much about myself in the past few years, and I think it's made me a better person in so many ways. That will help me take chances, get to know people, go to new groups, try new things.

To my wonderful friends, you are an amazing group of women. I was serious when I said you won't get rid of me easily. ;) There's no way I could let go of such kick ass friends. I hear Georgia is a great vacation destination, hint hint. Any of you are welcome at the Georgia Branch of the Jahner Compound (we will have an inflatable mattress and some floor space in the living room!).

And to the friends I don't know yet in Georgia...I'm excited to meet you, to get to know you. Playdates, coffee, sewing and vegan food anyone? :)

Stuff and Junk

I'm sort of irritated with my ostomy as of late. There is a LOT of pancaking going on, which isn't the end of the world. However, output gets under the wafer and that makes for a sad ostomy. There have also been some middle of the night emergency changes. I don't know how I wake up just in time.

Anyway, there are some things I can do: change my diet (which isn't really a long term fix unless I just want to eat rice, bananas, and applesauce all the time), use a pouch without a filter, use some sort of lubricant in the pouch (I already do this). I can try changing appliances. It's all a bunch of trial and error.

We did try some sticky rings that you add to the back of the wafer, and I don't think I'm having as big of an issue. I'll know more when I change the wafer tomorrow.

In some ways, the whole ostomy thing is easier for me than what I used to do. I don't even think about it most of the time, except when I'm having issues. But then again, it's a constant reminder that my life is different now than it was before September 2009. Change is hard, and I still will stop short at times, shocked that this has all happened. Really, I was radiated? Really, my rectum is gone? Really, I made it through chemo? It all seems so far away. And I wonder how I did it.

And I remember that I have a lot going for me. I think I always knew that, but now it's so much more obvious.

So what's next, you ask? I have an appointment with the wound care nurses this week, wherein I will holler about my ostomy issues and see if they have other ideas. There are medical records for me to pick up before we move. After arriving in GA, I'll start looking for a family doctor, who will hopefully have the info about an oncologist.

Sheryl Crow, you are so wise...

unless you didn't write this song. Although whatever the case, I think you're wise for singing it.

Soak Up The Sun

My friend the communist
Holds meetings in his RV
I can't afford his gas
So I'm stuck here watching TV
I don't have digital
I don't have diddly squat
It's not having what you want
It's wanting what you've got

I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up
I'm gonna soak up the sun
I'm gonna soak up the sun

I've got a crummy job
It don't pay near enough
To buy the things it takes
To win me some of your love
Every time I turn around
I'm looking up, you're looking down
Maybe something's wrong with you
That makes you act the way you do

I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up
I'm gonna soak up the sun
While it's still free
I'm gonna soak up the sun
Before it goes out on me

Don't have no master suite
But I'm still the king of me
You have a fancy ride, but baby
I'm the one who has the key
Every time I turn around
I'm looking up, you're looking down
Maybe something's wrong with you
That makes you act the way you do
Maybe I am crazy too

I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up
I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up

I'm gonna soak up the sun
Got my 45 on
So I can rock on
*****************

It turns out I *am* still the king of me, and Ms. Crow, I will rock on. Thanks for the inspiration today.

Wound update time!

There's not a whole lot going on with my ass wound these days. Eric is kind enough to change the gauze three times a day, and I just go about my business. But today I went to the wound care clinic to have the nurse take a look.

She measured 1.5cm long, and 3.5cm deep. I questioned the depth because it seems to vary depending on who is doing the measuring. One of the nurses did mention that the inside of the wound is spongy, so if the measurer presses too much, the depth will be, well, deeper. Healing, however, is happening! That's good news, yo. I would very much like to NOT have an open wound on my rectal area someday.

I feel good these days. Really good. Definitely better than I felt during radiation and chemo. Infinitely better than I felt a couple weeks after surgery. My ass doesn't hurt all the time anymore. I'm not all hopped up on oxycodone (okay, I miss that a teensy tiny bit). I still get tired, but absolutely nothing like I did during chemo. The kids and I are getting out of the house and attending groups and playdates. Everyone is a lot happier, I think. Reese has said a couple times that she's glad I'm not sick anymore because she likes going places.

I don't know, I just feel different. I feel like I need to grab hold of things, of experiences, spend time with friends. I've always leaned towards the positive, but I'm finding myself seeing the great things even in shitty circumstances. Maybe it's the Post Chemo High, wherein I'm so so very glad to be done that everything else is just good. Maybe it's a change forever. I suppose we shall see. I do know that I'm thankful for this life I've been given. Whatever happens in the future, I'm glad for right now.

I almost forgot!

The other night a friend who also happens to have an ostomy invited me to an ostomy support group. I thought it would be worth checking out, so I met her there. If you're in the Fox Valley and are in need of ostomy support, check out the group at St. Elizabeth's Hospital. WCONurses hang out there, as do many very nice people (and funny! lots of laughs). I bet if you go to the St. E's website, you can find some more info. Or just leave me a little note and I'll see what I can do.

At the group, they mentioned this website: http://www.wocn.org/index.php It looks like it could be very helpful, especially if you're looking for a WCON in your area or perhaps an area of travel.

One of the things that really impressed me was how positive the people were at the group. They are able to laugh at themselves, find humor in their situation. They are willing to share information and helpful tips. They are great listeners. I hope I can continue to be as positive about my ostomy.

The other thing that was really good for me to see was people who have dealt with colorectal cancer and are still living their lives years and years after diagnosis. I like to hear about and see in action success stories. I hope to be a success story too.

The port is gone! At least, it's gone from my body. Eric asked if we could see the port after surgery and the surgeon gave it to us in a little speciman cup. So it's on Eric's desk right now, haha. Looking at it, thinking about how it was inside my body, it's a little weird.

But hey, what about cancer *isn't* a little weird?

Anyway, things went well yesterday morning. The surgery prep and recovery took longer than the actual cutting out of the port, but I'm happy with my decision to do it this way. The surgeon also took a quick peek at my slowly but surely healing rectal wound and pronounced it good. Then he did a way bad job of repacking the gauze, but perhaps I'm biased because Eric does such an awesome job all the time.

So what to do with my blog? There are still things to come in regards to my diagnosis. I'll still be living with an ostomy and that will probably provide many comical adventures. It's very possible that I'll keep this blog for teh cancer stuff and start a new blog for the life stuff. I don't know...I kind of think people come here for the cancer related updates and maybe don't want to read my babble about what kind of vegan food I'm making or what amusing thing my kids said today. I would love to do a vegan food blog or a Columbus, GA related blog. I suppose we shall see. What with all the moving stuff going on right now, I barely have time to think about it.

For now, I'll concentrate on continuing to get healthy and the whole moving thing. If you have thoughts about the future of the blog, feel free to share.

Be where you are, otherwise you will miss your life.

More wisdom from teh internets. This one came from Harmony Cafe on Facebook. Harmony Cafe is a nice little coffee shop in Appleton, and they have a vegan menu!!! How much does that rock?

Anyway, I'm going to go be with my family, eat some homemade pizza, and try not to miss a second of my life. I hope you are all able to do the same, right down to the pizza part (it is delicious!).

A story for you

Once upon a time (about ten years ago), there was a girl struggling in college to find herself, to shape her life, to make decisions for her future. She worried about a lot of silly things, like whether she would find someone to fall in love with. Finally she grew weary of the worry and decided to live life according to her goals. Teaching jobs were plentiful in Arizona, so her master plan to graduate and then move to the southwest was formed. She didn't like winter and cold, Phoenix would be perfect! Guide books and maps were purchased, money was being saved, and a trip to Phoenix to check things out was planned.

Then like a sudden bolt of lightning, someone was dropped in her path that would change her life forever. The love she had been searching for was right there, but it wasn't without compromise. The girl decided to chase love for a while and abandoned her plans in hopes that someday they could be worked into her life again. The boy and the girl fell in love and chose to spend their lives together. Although the girl was wildly happy, the desire to relocate to a warmer climate never really left her mind completely. She learned that sometimes goals and dreams are pushed aside in favor of even better things, and was at peace.

The boy and girl had good times with friends and family, but along the line thought their own core family wasn't complete. The girl birthed a daughter and suddenly the family of two became three. Raising a child was a daunting task. The need to be with family and have job security became the new goal, and so the boy and girl made a choice to move to a new place. It wasn't Phoenix, it was still cold, but sometimes the pros outweigh the cons, and she felt good about the choices her little family was making.

Five years and a second child later, the girl was delivered another lightning bolt only this time it wasn't good news. She was sick. Cancer. The boy and girl were in shock for a time, but realized that the only choice now was to fight. Through radiation and chemo, through a major surgery, through more chemo, the boy and girl held each other up, supported each other, and leaned on friends and family who were willing to walk the difficult journey. On the way, the girl learned so much about life, about people, about priorities: some good lessons, some disappointing lessons, but life lessons all the same.

One day the boy said, "Life is too short to set aside all our dreams and goals." The girl agreed. Thus began the discussion of the future, the new reality. After being on the edge of life, they saw that change was again on the horizon. It was a hard decision: stay in a comfortable place and continue to forgo our dreams and goals or take a leap to an unfamilier city and start living the way we have always dreamed? The issues were debated late at night after the children were in bed, talking endlessly about hopes and dreams and what to do.

An opportunity presented itself, and the boy and girl decided to grab hold and hang on for the ride. Although they were saddened by having to say goodbye to so many people, the little family found themselves giddy about the future in a new place. Making their dreams come true fueled the excitement. And so the boy, the girl, and their babies are on the brink of challenges, of new experiences, of starting to live life again. The strength they found together will carry them through. And no matter what sorts of lightning bolts they face in the future, they will face life head on.

*******

Okay, so I'm not a super fantastic storyteller. I hope it was mildly entertaining. Did you figure out that the girl is me and the boy is Eric? Yeah, I knew you all were smarties.

I'm struggling now, not with any of the choices our family has made, but with the reactions of other people to those choices. I don't know how to explain why it's so important to me (not to mention important to Eric) that we start chasing those dreams we've always had. Life is too short, truly, and you don't know how much time you have. I don't know how much time I have. It sure sucks to go there, to think about that, but the reality is that I *do* have a 25% chance of recurrance. It's low, but it's still there. I force myself to think positive, that I'll be in the larger group, the 75% who remain cancer free. But there's a nagging voice that says I got stuck in the smaller group when I got cancer out of nowhere, and it could happen again, that the numbers won't be on my side.

The decision to move wasn't made out of fear, wasn't made out of some crazy that we caught along with the cancer. Believe you me, the prozac makes me completely sane and very zen. Our choice was made thoughtfully, with our children in mind, with our goals and dreams as a family in mind. If it's helpful, I can list the reasons, I'm happy to do so if someone is happy to listen. We are embracing a new reality and celebrating life by living it. I don't want to have regrets, wishing someday that I had taken an opportunity.

I debated with myself for several days about this post, whether I should try to explain or if I should just let it all go. I found that I'm having a hard time and when I'm having a hard time, the best way to banish it is to journal it. I feel I've really put myself out there in regards to this whole cancer thing, but this was a hard post to write. It's close to my heart, it's close to the heart of my family. In my heart I want those close to us to understand, to be excited with us, and of course there's room for sadness. I'm going to miss the hell out of the people I've gotten to know here, friends who have become family to me.

I don't know what else to say. LIFE IS TOO SHORT. Perhaps I will revisit this with more thoughts, perhaps I'll be able to just let it all go now. We shall see.

I don't like surgery.

I'm starting to have some anxiety about my alien port removal. Surgery is scary for me. I think it's the whole being put under anesthesia thing. No worries, it's not enough anxiety to take anything and I'm still sleeping (thank you, ambien). Just don't look too closely at my fingernails because I'm totally finding myself picking at them again.

Luckily next week is looking to be so busy that hopefully I won't think about surgery at all. And it's a quickie procedure. I'm going to be okay.

I think.

Sigh.

Who guessed the right measurements?

I got so busy the last couple of days, I forgot to update about my wound! Great news, it's getting smaller: 2.4cm long by about 2cm deep. Nice. I'm glad there's lots of healing going on. Wouldn't it be the shit if it didn't take 6 months to heal? Healing thoughts are appreciated.

The appointment went well. I brought the kids with me, my own little entourage, haha. They are almost always very patient and curious when I bring them to the various appointments I have. Lots of questions are asked, and it's such a unique learning experience. You're not getting this kind of education at public school, that's for sure. While it's kind of sad that children so little had to learn about something as crappy as cancer by living with it, it's also cool to share with them. When a 5 year old can tell you what a colonoscopy is, I think that's all kinds of awesome. When that same 5 year old is explaining to her little friends about my ostomy supplies (dug out of my purse, of course) like it's normal, it makes me smile. I hope this experience helps my children have more compassion, be more willing to help, and sensitive to people who are struggling.

Back to the appointment...the nurse who checked me in was all, "I'll be taking your dressing down and then one of the other nurses will come in." She was surprised that all she had to do was take some gauze out. I guess she hasn't seen me in a while. ;) It's such a relief to go in and NOT have the whole experience hurt. I'm sure the nurses are much happier now too. I know it was hard for them as well as me. The wound looks great, and is very clean, according to the nurses, so that's good.

The next thing? I go in for bloodwork next week and I also have the port removed. I like that things are wrapping up. Finally.

I feel so good. Yes, I get tired, but that's a minor thing. I'm back to doing housework, back to meeting friends, adjusting to the new normal. The new normal is a lot like the old normal, for me anyway. At least I think it is. I suppose it's been a while since I felt "normal." And what does that mean anyway? I am living life and greatly enjoying the opportunity to do so. I'm thankful every day for the friends and family I have, and for my kids and husband. I'm thankful that I get to feel good and that I get to do the things I want to do. I'm thankful it's not so much of a struggle anymore.

Are things always easy? Uh, NO. My ass hurts sometimes at the end of the day. I have to tell you, as good as Eric is at wound packing, it's still a bummer. And don't even get me started on my ugly swollen right ankle...blah.

But I know that the good is greatly outweighing the bad right now. Believe me, I'm sending that positive energy to anyone and everyone I know who is having a hard time. It's the least I can do.

Excitement

We were sitting around tonight when I happened to look at my legs. My right ankle was swollen and kind of gross, very much like when I was pregnant. It was only the one leg, which I thought was odd. My oncologist asks EVERY SINGLE TIME if there's any swelling in my legs. They must ask that for a reason, right? Eric suggested that I call the oncology unit. I talked to the on call oncologist (say that one five times fast) who after hearing about the swelling and the whole rectal cancer thing said I needed to go to the emergency room to have my leg ultrasounded. Apparently cancer patients are at risk for blood clots. Who knew??

So Eric and I loaded the kids up in the car for a fun field trip to the hospital. The last time I was in an emergency room I had a concussion from a car accident. I didn't realize how much hurry up and wait there was in an ER since I don't spend much time there. Anyhoo, the very nice ultrasound tech came and squirted the jelly on my leg, looked at the veins, listened to the blood flow, and that was pretty much it. Having a baby ultrasound is much more fun, in case you were wondering. A radiologist had to look at the images and report back to the doctor, who then had to talk to us. More waiting! More kids bouncing around the tiny room we were in because they were overtired (this occured right around bedtime, sigh). More me being worried that I had a blood clot that I was sure would totally disrupt my plans for the rest of the week.

After a while, the doctor came back and said I was fine. Eric took the kids to get the car from the valet (oh la la!) while I got dressed. The nurse gave me discharge papers and we left.

See? Exciting!

But not really. I'm supposed to ask my oncologist to take a look when I go in next week. I guess it's about time I asked why they keep pestering me about swollen legs.

Anyhoo, Eric posted a fun pic of the party in the ER on facebook. You should go look.

Look out, Wound Care Nurses!

Because the kids and I will be crashing your office tomorrow morning around 10am. I hope you're ready. ;)

On the wound front, I think things are going well. Sometimes my ass hurts, sometimes it doesn't. Today it was pretty okay. Yesterday, not so much. Eric hollered at me to take some ibuprofen, but honestly I didn't think about it. That sounds silly, doesn't it? If you hurt, you'd take something, right? It's actually not surprising that I'd just blow off taking something, because I kind of tend to do that. I said I would try to remember that it's an option.

Anyway, maybe we'll get some measurements tomorrow! Who wants to know how deep and long my ass wound is?? Any guesses? It will be like that Guess How Much The Baby Weighs, only with an ass wound. Good times.

On the No More Chemo Front, Eric reminded me that this Thursday is my first No Chemo Thursday. If I was still doing the every other week cycle, this would have been a chemo week. Have I mentioned lately how thankful I am to be done? I really really am. It's the best feeling to be able to start doing things we missed out on for so many months. We're getting out, seeing friends, going grocery shopping...it's the best. I'm glad we have this month before we move to spend time with all the people who were so awesome to us during this whole lame-o cancer thing.

My alien port comes out in a week and a half! I'm already starting to get anxious about being put under, I don't like it. However, I know myself, and watching the surgeon cut into me while being awake...no. Not happening. I seem to tolerate anesthesia well, so I'm sure it will be no big deal.

I never knew how strong I was until being strong was the only choice I had.

Isn't this so so true? Someone on one of my message boards has this as her signature, and it really resonated with me tonight. I can tell you all kinds of shitty things about having cancer but one thing that came out of all this was how strong I learned I am. How resilient I am. How determined I am. How much I love my husband and children. There were a lot of times that I had to dig deep, but I was able to find the strength I needed inside myself. Without my experiences, I might never have discovered this.

I'll tell you what's nice

Having the laptop back so I don't have to sit on the uncomfortable computer chair.
When chairs in general are padded.
Chinese food.
Having my parents here to visit.
Ambien (and therefore, sleep)
Cheesy top 40s and hip hop music.
Malibu and pineapple juice x 2 or 3
Eric being home.
Wearing pants that have not been used previously for sleeping.
Layering shirts.
Being done with chemo!!
A week full of fun stuff and not lame-o dressing changes.
Driving around in my car listening to Lady Gaga.
Columbus, GA newspapers.
Did I mention that Eric was home?
Pelicans.
Walking around the nature center today with my kids.

I hope nice things are happening for all of you too. :)

Normal!!!

If you consider sitting on a pillow at a park bench, that is. Hah.

Yes, the kids and I ventured to the park today to meet some friends. It has been soooooo long since I was able to take my kids to the park. Doing normal things feels good.

I also did such things as laundry, emptying the dishwasher, making pita bread (in progress), and sewing on Eli's cloth trainers. I may not move exceptionally fast, but things are getting done. The downside is that I'm wiped out right now.

Other happenings around here:

I downsized the wafer for my ostomy, which I am undecided about liking. This is kind of gross, but the hole in the pouch is smaller, so it's harder to dump out. I think the pouches I have are meant to be one use, but man, that's wasteful. As long as the filter is working (ie I don't smell like the Neenah paper factories), I'm good with emptying the pouch. There are little biodegradable baggies I can use so those get changed instead of the whole pouch that I still need to try. That might be a solution to my throwing too much away conflict. If only change weren't so hard. I'll work on it, because the amount of ostomy trash does kind of bug me. It's not a ton, I suppose, but for someone who has worked really hard to reduce the amount of garbage our family tosses, it's more than I would like.

I do think the smaller wafer is less noticeable under my shirts. That's nice, although I don't care that much if someone sees the pouch. It's no big deal.

Have I mentioned that NOT wearing pajama pants is nice? Well it is.

Ugh, I'm ready for a nap.

Ten thoughts in my head

Want a peek inside my head? Your wish is my command.

1. It irritates me that vacuuming tires me out so much. Seriously. I could probably go take a nap now.

2. Going to the wound care nurses is a lot more fun all drugged up. I suppose the upside to being oxy free is driving myself. I do like to drive.

3. My wound, speaking of, is doing fine. The nurse suggested that we try to change it three times a day instead of two if we can. She explained that the cells needed for healing like being wet but if they get too wet they drown. I don't want drowning cells in my ass, that just doesn't sound like a good situation. So we'll see what we can do. She said even doing it just on the weekends would help.

4. I was really rocking my NOT pajama pants today, and a couple of my new shirts (layering, people, it's all about layering).

5. I thought I would feel good enough today to maybe do some sewing while the kids were off having a great time with Uncle Mike, but I really didn't. So I rested, caught up on House MD, and ate a big salad. There's always tomorrow.

6. It's still weird that chemo is over. Perhaps it was because I was sick over the weekend, but it was all very anticlimatic. Overall, I think that's okay. I suspect some would like to make a big deal, but I don't really. I won't turn down a celebratory drink, but I have a hard time getting all happy when there are others still fighting. Congratulations and hugs, however, would be just fine with me.

7. I am really thankful for my husband and my children. I'm thankful that I can slowly be their wife and mother again. I'm thankful that the focus will be off me and onto something else, like us living our lives and having adventures. I'm thankful that we get to have adventures together.

8. I am freaking hungry and want to eat everything. That's good right? Vegan food blogs torment me and yet I still keep looking at them and snatching recipes. After not enjoying food and eating for so long, I'm looking forward to cooking more often.

9. Lately I have a hard time getting stressed out about the little things. It's probably the prozac. And I think that's okay.

10. As much as I want to be back to normal, I'm being gentle with myself. I'm letting myself rest when I'm tired, eat when I'm hungry, laugh when things are funny, and cry when I need to. Perhaps self care, which often is overlooked by us busy women, is one of the biggest lessons in this shitty situation. There's nothing like cancer to force one to slow down and heal. I hope people don't think I'm a slacker, and I'm really making an effort NOT to extend myself too much.

There you go. Of course there's always more, but we'll save that for another day.

Whine whine

When am I going to feel like myself again? I hate the creepy crawly restless feeling I get from chemo, the hot flashes, the way my lips and teeth feel weird. Don't get me wrong, I feel better today, but geez. I'm at the point where I'm tired of sitting in the recliner, but getting up and doing stuff sounds so daunting because I get exhausted by silly things like making toast for the kids.

I think my leaky ass wound and mysterious rashy ass doesn't help. All right, the ass wound doesn't leak all day long, just when the gauze starts to get saturated (haha, GROSS). And I do have some sort of perhaps yeasty rash around the wound area. That kind of cracks me up in an "If I don't laugh I'll cry" sort of way because I went something like 13 weeks with the wound vac and had little to no skin issues. Luckily I get to see the wound care nurses tomorrow and I can be all, "Hey, check this rash out." And they totally will. Maybe there's some cream or something I can use on it.

I just want to do what I want to do without getting so tired, and without my butt hurting. I'm frustrated that things aren't magically normal, even though I'm done with chemo. Rationally I understand it takes time for my body to heal, it's going to take time for the wound to heal. Sigh.

Goodbye forever, little pump!

Yes, the little pump is off. Hopefully that will be the last time anyone has to access my alien port before it comes out on June 4th. That's right, my surgeon gets to hack into me one last time. For the record, my oncologist was totally supportive of me removing the port. He told us that my chances of recurrance were 50/50 without the 8 cycles of chemo, but with chemo I'm down to a 25% chance of recurrance. I feel comfortable ditching the alien port with those odds, and it can always be put back in should I need it.

But let's all hope that doesn't happen, right?

I've been thinking more about how many people have helped us through this. Anyone who made a meal, took care of my children when I couldn't, stopped by to check on us, drove us places...there are countless things people have done to support us.

Denelle, the muffins were fantastic. Om nom nom nom. Your willingness to listen and ask questions made me feel normal. We loved your visits, your veg chili, and how much you care about us. It means a LOT.

Heidi, Vanessa, Beth, Jehan...anyone who is willing to take on my hooligans in addition to their own children is a saint! Thank you for helping get them out of the house and doing fun things with them when I wasn't able to do so. More thank yous to people who offered, because tons of people did. I'm so lucky to be part of such a great community of people.

Sarah and Scott, the soups you made me were so yummy! Every single one of them was enjoyed. We love your visits, and thank you for helping while I was in the hospital.

Katie, thank you for asking how I'm doing, and for loaning us your fun schooly activities. :)

I'm sure I'm missing people. Look at how much help and support we've had over the past nine months! It's amazing and humbling and awesome. It has made me look at the world differently, look for ways I can help others.

This isn't the end. It's a new beginning. That doesn't mean we forget the past, but instead I think we celebrate triumphs, mourn things that didn't go so well, and move forward knowing that we're all stronger people.