The Alien Port and I are not very good friends right now. I tell myself not to be a baby about it, that things will probably hurt as much or worse, that I'll feel worse. Bottom line? This really fucking sucks.
Does it suck because it's happening so fast? Nine days ago I lived in obliviousness of cancer. That was something other people had. Not me, man. My biggest problems were things like how to keep our grocery bill down and where the heck did that missing library book go? And now next week I'll start chemo? That's insanity. And to be honest, I don't think I've processed it fully yet. Is that a good thing? I don't know. Sometimes it makes me feel safer, and sometimes it makes me feel a couple steps behind. I'm glad I have Eric who parcels out information and fills in the blanks on the things I deliberately ignored because it was just too much at the time.
I wish I had a crystal ball to see into the future, maybe just a couple weeks at a time. Am I doing okay? Are the kids okay?
I think it's okay to be sad. And overwhelmed. And scared. And hopeful. It's okay to be whatever it is I am in the moment. I give myself permission.
Thursday, September 17, 2009
Wednesday, September 16, 2009
Keep on keepin' on
I've been taking it easy today. The Alien Port and hose is kind of hurty, but I suppose for something shoved under your skin, I shouldn't expect anything less. Tylonel and ice helps. And so does vegetable stew brought from a friend of mine. :) I've been moaning and groaning to Eric for weeks before this that I wished for someone else to cook delicious vegan food for me, and I'm getting my wish!
Today the kids and I worked on some homeschool projects that were in the works before cancer. They're really cool lapbooks: http://lapbooksbycarisa.homestead.com/index.html Doesn't that look fun? Reese is creating a lapbook about guinea pigs, and Eli's lapbook is about transportation. We'll take pics when we get a little farther. Eli spent some time cutting apart pictures of vehicles. Reese and I busted out the many guinea pig books from the library and learned that guinea pigs originate in Peru, and where that is. She wanted to work on some writing too, but after about an hour, things started to get a little dicey and we all needed a break...to make tents! The tent making gave me some time to lay down and ice the Alien Port, so that was nice.
One of the frustrating things for me is the limitations. Right now it feels like someone kicked me in the throat. The skin is all tight, and I just feel tired. I'm not used to hanging around on the couch. We're very Get Up and Go type people, and we typically have things going almost every day. Obviously and rationally, simplifying is good right now. It's just hard.
Today the kids and I worked on some homeschool projects that were in the works before cancer. They're really cool lapbooks: http://lapbooksbycarisa.homestead.com/index.html Doesn't that look fun? Reese is creating a lapbook about guinea pigs, and Eli's lapbook is about transportation. We'll take pics when we get a little farther. Eli spent some time cutting apart pictures of vehicles. Reese and I busted out the many guinea pig books from the library and learned that guinea pigs originate in Peru, and where that is. She wanted to work on some writing too, but after about an hour, things started to get a little dicey and we all needed a break...to make tents! The tent making gave me some time to lay down and ice the Alien Port, so that was nice.
One of the frustrating things for me is the limitations. Right now it feels like someone kicked me in the throat. The skin is all tight, and I just feel tired. I'm not used to hanging around on the couch. We're very Get Up and Go type people, and we typically have things going almost every day. Obviously and rationally, simplifying is good right now. It's just hard.
Tuesday, September 15, 2009
Gross!
When I laid down with Eli to help him get to sleep, I fell asleep too. Eric came in to ask me if I wanted to go to bed. After laying in bed for a while, I decided to get back up. Laying in bed waiting to fall asleep isn't all that much fun. So instead, I'm going to post pictures of my ass! And the Alien Port! Aren't you all so lucky?
This is kind of gross, you've been warned.
I'm told this mass is 5cm. I could describe that for you or compare it to something, but I think it's more fun to have you go round up a ruler and see for yourself. Bonus points if you get someone to take a picture of your expression when you do. But hey, look how clean my guts are!
And this is the Alien Port. Just so you know, if you prefer, you can also call it the Monster Alien Port because that is what Reese wants to call it.
See? Totally under my skin. If that's not freaky, I don't know what is. Right now my neck hurts kind of like when you have a bad cold and your glands get swollen. Everything feels really tight. I hope that feeling goes away because I can't turn my head very well and that's kind of a bummer.
Wow, what a day!
It's quiet here now. Reese and Eli spent the day visiting family, and Eric is off gathering them up to bring them back home. So I'll try to bang this out before they get back!
After we dropped the children off at about 9:30ish this morning, Eric and I made our way to the hospital. Parking was a bitch, what the heck, hospital? We were a little early though, so no big deal. I checked in, filled out some papers, and we went up to take care of the tests. Blood draw, no big deal, and what do you know? A relative happened to be one of the many lovely nurses I met today! That was nice. So I drank some more stuff for the CT Scan, but it tasted WAY better than the colonoscopy cocktail. And I was thirsty (nothing by mouth after midnight, yo). The chest x-ray was fast, and turned out great. This is a good thing, as one of my biggest (secret) fears was discovering that I'm riddled with cancer, which at this point does not seem to be the case. So yay!
After some waiting (CT cocktail takes an hour to settle), I went in the tube, listened to the strange manly voice telling me when to breathe and when to hold my breath, and it was done fast.
Then the scariest part for me, the sedation and the surgical stuff. We had to go to another part of the hospital for all that business. The nurses and staff were soooooo nice. Everyone was all, "Your doctor is great! He'll take good care of you! Do you need another warm blanket?" Yes, they hand out warm blankets like candy and rightfully so. It was freaking cold in that place.
Now I've never had a panic attack. I don't have anxiety issues generally. But that little ride on the rolling bed to the surgical unit is panic inducing. I didn't panic, but I totally see how people would. You're laying there, you look like a sick person, and if you've never done this before...SCARY. The surgical room was cold, but it didn't matter because before I knew it I was fast asleep. The very funny anesthesiologist (sp? I should look that up) asked me to tell him when I started feeling sleepy, but I don't think I made it. I remember nothing before waking up in the recovery room with a creepy port under my skin.
That's right, I said it. UNDER MY SKIN. I thought it was on top of my skin covered with some bandage. It's totally something out of Alien. I'll have Eric, my professional photographer, take some pictures. Maybe I'll keep wearing tank tops for a few more days so we can all play Find the Port. We also got some nice shots of my colon (and the cancer). I think Eric plans to do some scanning and posting of those.
So at this point, we don't know a whole heck of a lot more than we did before. My colon looks good (yay colon!). The chest x-ray looked good.
I was more than ready to book it out of the surgical center, and I was starving. Eric stopped at Taco Bell and let me tell you, a bean burrito (no cheese) never tasted so good. And then when I arrived at home, there was a package on my front stoop. Know what was in that package?? A freakton of vegan treats from Cousin Jenny!! She lives near Whole Foods in Milwaukee and hooked me up. Perfect timing too, since I am ready for food. It was such a great surprise!
Eric left me at home to rest, and so he could be with the kids. My afternoon was spent crashed on the couch watching Degrassi Goes Hollywood (hey, you shut it. Degrassi is good TV) and drinking water because I'm soooooo thirsty. I cooked some squash, and before anyone gets all excited, cooking squash is very easy, it took me about a minute of prep time. The oven does all the work.
My only complaint? My neck feels tight because of the Alien Port. I guess if you shove something under your skin that's going to happen. Don't worry, the doc hooked me up with Dr. House's favorite, vicodin. I'm not sure I'll take any, I feel pretty okay right now.
Anyway, the thoughts and prayers and messages really made my day. It's easier to be brave when I know people are thinking about me.
After we dropped the children off at about 9:30ish this morning, Eric and I made our way to the hospital. Parking was a bitch, what the heck, hospital? We were a little early though, so no big deal. I checked in, filled out some papers, and we went up to take care of the tests. Blood draw, no big deal, and what do you know? A relative happened to be one of the many lovely nurses I met today! That was nice. So I drank some more stuff for the CT Scan, but it tasted WAY better than the colonoscopy cocktail. And I was thirsty (nothing by mouth after midnight, yo). The chest x-ray was fast, and turned out great. This is a good thing, as one of my biggest (secret) fears was discovering that I'm riddled with cancer, which at this point does not seem to be the case. So yay!
After some waiting (CT cocktail takes an hour to settle), I went in the tube, listened to the strange manly voice telling me when to breathe and when to hold my breath, and it was done fast.
Then the scariest part for me, the sedation and the surgical stuff. We had to go to another part of the hospital for all that business. The nurses and staff were soooooo nice. Everyone was all, "Your doctor is great! He'll take good care of you! Do you need another warm blanket?" Yes, they hand out warm blankets like candy and rightfully so. It was freaking cold in that place.
Now I've never had a panic attack. I don't have anxiety issues generally. But that little ride on the rolling bed to the surgical unit is panic inducing. I didn't panic, but I totally see how people would. You're laying there, you look like a sick person, and if you've never done this before...SCARY. The surgical room was cold, but it didn't matter because before I knew it I was fast asleep. The very funny anesthesiologist (sp? I should look that up) asked me to tell him when I started feeling sleepy, but I don't think I made it. I remember nothing before waking up in the recovery room with a creepy port under my skin.
That's right, I said it. UNDER MY SKIN. I thought it was on top of my skin covered with some bandage. It's totally something out of Alien. I'll have Eric, my professional photographer, take some pictures. Maybe I'll keep wearing tank tops for a few more days so we can all play Find the Port. We also got some nice shots of my colon (and the cancer). I think Eric plans to do some scanning and posting of those.
So at this point, we don't know a whole heck of a lot more than we did before. My colon looks good (yay colon!). The chest x-ray looked good.
I was more than ready to book it out of the surgical center, and I was starving. Eric stopped at Taco Bell and let me tell you, a bean burrito (no cheese) never tasted so good. And then when I arrived at home, there was a package on my front stoop. Know what was in that package?? A freakton of vegan treats from Cousin Jenny!! She lives near Whole Foods in Milwaukee and hooked me up. Perfect timing too, since I am ready for food. It was such a great surprise!
Eric left me at home to rest, and so he could be with the kids. My afternoon was spent crashed on the couch watching Degrassi Goes Hollywood (hey, you shut it. Degrassi is good TV) and drinking water because I'm soooooo thirsty. I cooked some squash, and before anyone gets all excited, cooking squash is very easy, it took me about a minute of prep time. The oven does all the work.
My only complaint? My neck feels tight because of the Alien Port. I guess if you shove something under your skin that's going to happen. Don't worry, the doc hooked me up with Dr. House's favorite, vicodin. I'm not sure I'll take any, I feel pretty okay right now.
Anyway, the thoughts and prayers and messages really made my day. It's easier to be brave when I know people are thinking about me.
Monday, September 14, 2009
Are you ready?
Um. No, not really.
Tomorrow is "Let's Cram Every Test You Need Into One Day" Day. Sounds exciting, right? Here's what I get to do tomorrow:
Blood work
Chest x-ray
CT Scan
Colonoscopy
Port, um, installation (?)
That's a lot of stuff and I'm sure it will be a very busy day. Reese and Eli will hang out with some family.
I don't really have much else to say, it's been a long afternoon.
Tomorrow is "Let's Cram Every Test You Need Into One Day" Day. Sounds exciting, right? Here's what I get to do tomorrow:
Blood work
Chest x-ray
CT Scan
Colonoscopy
Port, um, installation (?)
That's a lot of stuff and I'm sure it will be a very busy day. Reese and Eli will hang out with some family.
I don't really have much else to say, it's been a long afternoon.
Sunday, September 13, 2009
The E.N.D.
I love the Black Eyed Peas. Is that weird? It all started with a little song called My Humps, which my 5th and 6th grade girls liked to sing on the playground. Can we all say INAPPROPRIATE?? So I tuned in more to the local top 40s station they liked to listen to in order to bust them when they decided to hold their version of American Idol complete with swears and naughty dances. And what do you know? I'm hooked on top 40s music like it's crack. You name a song on the top 40 (mostly pop and hiphop, since I'm confessing it all here), I probably know most of the lyrics. Reese's favorite song for the longest time was "Low" by Flo Rida. I clearly have no shame.
I was in the car this evening, listening to the Black Eyed Peas "The End" CD. The first song on the CD is Boom Boom Pow, but it's prefaced by some odd, cyber sounding talking. I usually fast forward through that to get to the good stuff. Tonight there was some traffic, so I didn't get a chance and actually listened to that cyber sounding guy. For those of you who aren't Black Eyed Peas afficionados, here's what he says:
Welcome.
Welcome to The E.N.D.
Do not panic
There is nothing to fear.
Everything around you is changing
Nothing stays the same
This version of myself is not permanent
Tomorrow I will be different
The Energy Never Dies
Energy cannot be destroyed
Or created
It always is
And it always will be
This is The E.N.D.
And the beginning
Forever
Infinite
Welcome...
Does that give you chills or what??
Tuesday afternoon, laying on the table in the doctor's office after the initial exam, when he told me he strongly suspected cancer, it was the end of the world. That's it. Pack up and go home. Game over. All I could think about was, "What am I going to do?" Over the past few days I've come to realize that it's not about what I am going to do. My friends and family have shown me it's what WE are going to do. I'm so thankful for that.
And the wise Black Eyed Peas are right. This isn't the end. This is a beginning. I have been given something, a beginning. I don't know what the end result will be, but I'm glad to not be alone.
In case you were wondering, the E.N.D. stands for Energy Never Dies. :)
I was in the car this evening, listening to the Black Eyed Peas "The End" CD. The first song on the CD is Boom Boom Pow, but it's prefaced by some odd, cyber sounding talking. I usually fast forward through that to get to the good stuff. Tonight there was some traffic, so I didn't get a chance and actually listened to that cyber sounding guy. For those of you who aren't Black Eyed Peas afficionados, here's what he says:
Welcome.
Welcome to The E.N.D.
Do not panic
There is nothing to fear.
Everything around you is changing
Nothing stays the same
This version of myself is not permanent
Tomorrow I will be different
The Energy Never Dies
Energy cannot be destroyed
Or created
It always is
And it always will be
This is The E.N.D.
And the beginning
Forever
Infinite
Welcome...
Does that give you chills or what??
Tuesday afternoon, laying on the table in the doctor's office after the initial exam, when he told me he strongly suspected cancer, it was the end of the world. That's it. Pack up and go home. Game over. All I could think about was, "What am I going to do?" Over the past few days I've come to realize that it's not about what I am going to do. My friends and family have shown me it's what WE are going to do. I'm so thankful for that.
And the wise Black Eyed Peas are right. This isn't the end. This is a beginning. I have been given something, a beginning. I don't know what the end result will be, but I'm glad to not be alone.
In case you were wondering, the E.N.D. stands for Energy Never Dies. :)
Saturday, September 12, 2009
I'm trying to figure out how to post pictures here, and it's going to make me start cursing soon. Hah.
Anyway, I got my hair cut today. I thought I would be all sad but I wasn't. The stylist, Sylvia, did a fantastic job. I think this might be the shortest my hair has ever been, at least since middle school. Here's a before and after for your veiwing enjoyment.
I think I will enjoy rocking the short hair!
All right, some updates.
Eli and the weaning...it's going okay. He's easily distractable most of the time. There were no requests for Un in the night. We are down to once in the morning and once before bed. It still hurts my heart when he cries for Un and I have to say no. Secretly I think to myself that if after all this is over, if he asked to nurse, I would let him. And if he started back up again, I would be totally fine with it.
Reese slept in her upper bunk bed last night. She wanted to and I said, "What the hell." No, I didn't actually say that out loud. I rarely curse in front of my children. It was an exciting bedtime, and seemed to work out.
Did I talk about a tentative timeline for chemo and surgery? I can't remember. Just in case I didn't...chemo will start soon after the PET scan on the 22nd. I don't know how soon. There will be six weeks of that, about three weeks off, then surgery. I believe that puts surgery around Thanksgiving? Of course, this will all depend on what is found after all the tests.
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