Wednesday, September 30, 2009
After radiation, Eric and I went over to chemo. Thus began the eternity of waiting. In all fairness to the chemo department, they were having a problem with someone's treatment that was backing up their schedule. Then the nurse had to fill out a bunch of paperwork about the chemo pump. Then she had to talk about side effects and how to use the pump. Then she hooked up the pump to the alien port.
The pump is basically as long as my hand and as wide, and maybe two inches thick. Like a big wallet? Too bad it doesn't filter out money, huh? Anyhoo, it continuously delivers chemo drugs through a very long tube that is hooked to the alien port. No, the chemo drugs aren't pretty colors, they are just clear (I was gunning for colors too, but oh well). The needle in the alien port doesn't hurt. The nurse assured me that you really had to pull to get the needle to come out. I have to go in every Wednesday to get more chemo drugs.
Confession: I'm not crazy about this pump. I have it slung over my shoulder kind of like you'd wear a messenger bag, but I think I might be a dork and wear it on my waist like a fanny pack. Right now the straps pull on my neck and it swings around and in general makes me cranky. I can play around with it and find something that works.
Who was wondering about showering?? I know I was. You don't get to detach yourself from this thing, unfortunately. The bag can hang outside the shower, like on the curtain rod or something. Don't worry, the tube is really long. Like really long.
Sleeping? The nurse suggested putting it under my pillow. Well I can tell you, I'm only doing that if the Chemo Pump Fairy visits in the night and leaves me some gifts. People put this thing under their pillows? What kind of pillows are they using? Mine isn't all that big or thick.
Yeah. I'll get used to it. I don't really have a choice. Oh and around my waist? Seems somewhat better.
I'll be thinking happy thoughts and sewing for the rest of the day. Your happy thoughts are appreciated, too.
Tuesday, September 29, 2009
The other day I pulled out a yoga DVD. A friend of mine suggested it might help with trying to stay relaxed. And exercise is good for you, yo. The first time I followed along with the routine it reminded me of yoga class in college. Yes, I took yoga class. I had to have PE credits, blah blah, and it was a nice place to doze off. I mean, meditate. Back off, okay? I had a lot of stuff going on and sleep wasn't a priority. I remembered some of the basic yoga positions after all these years. My friend was right, yoga is relaxing. I think it was more fun to reminisce.
Remember college? Remember how easy it all was? My big problems back then seem incredibly silly now, like not getting along with my roommate and having a crush on a friend (who already had a girlfriend, gah, what a mess that was). Oh and let's not forget where we were going to eat lunch or what movie we were going to see. Like Napoleon's Uncle Rico, sometimes I wish I could go back, not to be a star quarterback but to be a part of an easier time again. Going to class, hanging out under the tree at lunch, working at Arby's, living in the dorms...I don't think I fully appreciated all that at the time.
On the verge of starting what might be the most challenging time in my life so far, I sure as heck appreciate those times now.
Monday, September 28, 2009
I don't know how to feel about this. Relieved that we have a set time every day so I can start gathering friends and family to help watch Reese and Eli. Worried. Scared. Anxious. Angry at all the change. Glad we're moving forward. Thankful that I have so many awesome friends and family around us. Frustrated. Sad to be dealing with this, that others have to deal with it because they know me.
This is all so much. So out of control. I find myself nitpicking about stupid things because hell, I can control how the toys are put away or how the laundry is done. Goodness knows I've had little to no control over anything cancer related. I need to let go, or at least try, and just be okay with not controlling everything. My life before this was planned, scheduled. I dislike things being up in the air, waiting for a phone call. Maybe I'll feel better about it when we have those people in place to help with the kids and I start going for treatments every day. I should probably quit wasting so much mental energy stressing and focus on loving my kick ass husband and my rockin' kids. And my other family and friends. Serenity Now!!!
So yeah. I have a sewing project for today that involved altering an existing pattern to make it bigger. The pieces are all cut out. I also have a half finished jumper for Reese that I'd like to finish. Tomorrow is LLL in Appleton, and I think we might drop in on that.
Isn't it funny how life can screech to a halt, and yet still keep moving? It's such a weird place to be, bizzarre.
Sunday, September 27, 2009
So my parents are here, hanging out. My dad made a spicy sweet potato soup for dinner, along with garlic bread. The soup involved a trip to Woodmans, and it's always a blast to take people to that crazy place for the first time. Who knows what I'm talkin' about? My mom and I went to a Passion Party. Good times, man, good times. And the friend who hosted the party always has the best vegan food.
But it's Sunday, and I'm feeling anxious. Tomorrow is Monday, and hopefully the radiation office will call and we can get appointments figured out and just get this shit started already. I'd complain about waiting, but if you look at the date of my diagnosis, it hasn't been that long. Not even a full month. I get weird though because I know it's there, teh cancer, growing in my ass. I don't want it there (obviously). So let's get rid of it, right? Right.
I've been thinking a lot about all the things I've done in my life that required strength. My thought is that if I pull bits and pieces from those experiences I'll have enough to get through this. Wow, how many times have I had to step up, either to take care of myself or others? Really rough times, like the internal collapse of the school where I worked, dealing with life after that car accident, working through family troubles when I was younger. So often I've turned in on myself, written about my problems the way I'm doing now (I have stacks of journals, literally). It takes a chunk of wisdom to know when to turn to other people for support, help, or just a hug, especially when you're used to taking care of business yourself.
I so often don't know what to say when people ask me how I'm doing. Snappy answers like, "I'm fine, aside from having cancer" are right on the surface, but it doesn't always seem appropriate to answer that way. Of the 1001 emotions I'm feeling, which one am I supposed to pick? "How are you?" That's such an automatic question, so I'm not bothered when people ask. I just hope they understand when I don't know what to say.
Enough musings for today. I have a whole day ahead of me. Last night I mixed up what are possibly the best pancakes ever in the history of the world. You have to plan ahead for these because they need to rest overnight. My parents will be here until afternoon, and it looks like it's going to be a nice day. Go enjoy it people! I know I will. Snatch those good days up and hold them close because you don't know when you're going to get thrown a really bad day that will change your life.
Friday, September 25, 2009
So in case anyone was wondering, that's the update. Sorry it's so lame. Hah.
Thursday, September 24, 2009
So we saw the radiology oncologist today. At least that's what I think his official title is. The radiologist is apparently the person who reads the PET scans? I don't know. So he's hereby going to be called the Fry Doctor. I wonder if he would be amused by that? He seems like a nice guy, answered our numerous questions. He doesn't score points for the rectal exam, but at this point, no one does, really.
First we chatted with his nurse about radiation in general, side effects, that sort of thing. She asked if we had any questions, and we were all, "Well, we have questions, we just don't know who to ask." She acted surprised and taken aback that we were asking the stuff we did, especially stuff about S E X (come on, you know we do it, proven by our two children). At one point she even apologized for blushing. I'm sure she mostly deals with people over 50 who have rectal cancer, maybe those people aren't having sex anymore? I don't know.
Apparently when you go in for your consult with the Fry Doctor, they get you set up to the do radiation simulation too. We didn't know that as it was suggested to us that we'd have one appointment to talk with the Fry Doctor, then a separate appointment to have the simulation. We were there anyway, right? Basically the simulation is a CT scan and is used to figure out exactly how to send the radiation right at teh cancer. Some parts of it are kind of cool, and some parts are not. I will explain. Feel free to stop reading for a little bit if you're easily grossed out.
The simulation is in a CT scan machine (a tube). I changed into hospital gowns and had to lay on a hard table. There's a belly hole, and the idea behind this is to squish your guts as far out of the way of the radiation field as possible. Then the techs put a plastic bag under my legs, filled it with some chemicals, and it foamed up around my legs, making a mold of the lower half of my body. When I go for treatments, it's important that I lay in as close to the same position every time as possible. The mold will help with that.
While the mold was setting, the Fry Doctor did a rectal exam (boo). He wanted rectal contrast for the scan, so this involved a tube in my ass so they could squirt the contrast up there. Laying on a scanning table with a tube up my ass was a low point, let me tell you. Luckily (unluckily?) I had time to contemplate how the hell we got to this point while the techs did the scan. I decided not to cry in the tube. I thought it wouldn't be helpful, and the techs kind of don't like you moving around in those things.
After the scan, the tech got to play tattoo artist. She used India Ink. I know because I looked. No tattoo guns though, she used a needle like they do in prison. Everyone who talked about the tattoo marks was very apologetic and I kept saying, "I really don't have a problem with tattoos." And then they laughed because I have a very visible tattoo on my arm, not to mention the other three that I doubt could be missed in an open backed hospital gown. The dots will help the techs line up the machine properly when I go for treatments. The tube was removed from my ass (I don't know why there was a delay with this...sigh), and I was released.
Then Eric and I talked to a social worker. And I cried. She asked about the kids, and that made me cry more. I'm still overwhelmed. I don't feel like I have much of a handle on this at all. At one point this afternoon we thought I would start treatment on Monday, but that all depends on how much longer it takes the radiologist to look at the PET scan (s/he still hasn't yet). The computer program that tells the radiation where to go takes anywhere from 1 to 5 days, although the Fry Doctor did say that as long as the PET scan person didn't see other cancer, it was an easy program to write.
I get stressed out about scheduling and finding people to watch the kids. Tons of people have offered, it's just a matter of coordinating. Most days treatment will only take 15-20 minutes, if that. Once a week I'll meet with both the chemo doctor and the Fry Doctor so they can see how I'm tolerating treatment. I would like a predictable routine. I like to have my calendar and look at it and know what our plans are so I can make other plans, or just figure out when to go to the grocery store. Maybe I just need to quit being such a planner for a while and embrace the chaos?
Anyway, that's my story for today.
Yeah, that probably did it. I wasn't even conciously thinking about the appointment, but it was THERE in my mind. Making me not sleep well. Booooooo.
So the appointment today is just a sit down with the radiologist. I anticipate it will be a lot like the sit down with the oncologist, only we'll talk deadly radiation instead of chemo. Frying my organs. Well, and teh cancer. But my organs! You don't realize how much you like your guts until you face the idea of radiating them.
It's just all so bizarre. Do you realize it's only been 23 days since I was told I have cancer? It feels like a lifetime.
Wednesday, September 23, 2009
Reese snagged this pair right away:
And I feel better about the pants situation. Did I solve it in the easiest, fastest way possible? Oh, I guess not. Running out and buying a couple cheapo Big Box store pairs of pants would have saved an hour or two. The thing I like about sewing is that the chances of some other little kid waltzing into Letter School or an LLL meeting or where ever wearing the same pants as Reese? Unlikely. One of a kind is fun for me, and since I have the ability (not to mention piles of fabric), why the heck not?
One other piece of news before I start cleaning up this disaster of a house: it's very likely that this blog will be moving to another site. Eric can't see the blog at work, and it would be really nice if he could. We have a lot of reasons to want to stay closely connected right now and unfortunately blogger isn't allowed at his work. Don't anybody panic! I'm not ditching you all, you sure can come along if you would like. Since I lean way towards lazy, I might leave the content already here where it is and just link to this blog in case anyone wants to reread.
So yeah. You'll all be the first to know if I jump ship here. ;)
Tuesday, September 22, 2009
Fact #1: teh cancer is in just the one place (rectum/anus, for those of you trying to catch up on this wild ride). The PET scan didn't light up anything else.
Fact #2: The chemo oncologist said that for the 6-8 weeks before surgery chemo, it will be administered continuously through a battery pack. So I'll have a needle in my Alien Port, and a bag of chemo juice to lug around.
Fact #3: There aren't really a lot of side effects of the chemo. My hands and feet will most likely get dry (varying degrees of dryness). Some people get mouth sores. Most likely not any hair loss from the chemo.
Fact #4: Most of the pesky side effects are caused by the radiation. I'm not going to talk about those because frankly, they're gross. But the radiation will be concentrated on my abdomen, so you just use your imagination (or your speedy google fingers).
Fact #5: Radiation will be five days a week for 5-6 weeks (in combination with chemo). Maybe. The oncologist said that's usually how it goes. After the initial measuring and such, it will only be a really short visit.
Fact #6: 3-4 weeks after radiation/chemo, I will have surgery (I guess we already knew that).
Fact #7: After recovering from surgery, I will most likely have another 16 weeks of chemo, and for that I'll have to go visit the lovely cancer center because it will be through IV.
Fact #8: Our doctor really likes baseball. I mean really likes it.
Fact #9: The PET scan was cool to look at, and teh cancer looks freaking huge. We don't know what stage it is. Stage is something that is assigned by looking at the pathology of things after surgery.
Fact #10: Chemo/Radiation can't start until I get an appointment with the radiology people. Tomorrow is Wednesday, so getting in still this week is iffy. So we're looking at another maybe two weeks. Of waiting. Oh joy.
Overall, it was a very anticlimactic visit (thanks for the words, Eric). We found out some stuff, we looked at some cool pictures, we found out teh cancer isn't invading any other organs. It was a mixed bag of good news and more overwhelming information. For all the stressing out I've been doing, I don't know that I feel all that much better really. I'm kind of just...here. I don't know.
Not really. Well, I toasted it first, spread on lots of peanut butter, and then shoved it in my mouth.
If you ever have a PET scan, let me tell you, it's BORING. I was taken back to a little room, kind of like a closet, and the tech put in a temporary IV. He tested my blood sugar (88 if you were curious like I was) because they won't do the scan if someone's blood sugar is over 200. Then one of the nurses brought in a syringe encased in metal (really) and they injected me with the radioactive juices. Then I was told to relax and take a nap for an hour.
Yeah, right. I'm in this closet like room that's not even really a room. It's more like a partitioned off area with a shower curtain around it. I can hear the techs and the nurses chatting, and it was cold in there even with a blanket. So I laid around thinking about the House episode I watched last night and about some stuff I need to do today...basically anything but cancer because I didn't want to start crying. And about halfway through I had to pee like crazy.
After an eternity of that, I was ushered to the bathroom, then taken to the tube room. The tech and the nurse asked me about ten times if I was wearing a bra or if I had any metal in my pockets. Okay, it wasn't ten times, it was twice. They let me listen to the radio while I was being scanned. I kept my eyes closed the whole time. I'm not claustrophobic exactly, but having my face inches from the inside of a tube kind of makes me think of graves and being buried alive. Freaky, man, freaky. So eyes closed and focus on the music it is! I cleverly figured that the scan would last for about ten songs, if the average song is about three minutes long. I was close, it was nine songs and commercials.
And I know nothing more than I did before the PET scan except that they got good pictures. Which I didn't see. We should know more after meeting with the oncologist later this afternoon.
I'm not supposed to be in close contact with my kids for six hours. :( That's a long time.
Monday, September 21, 2009
And isn't that a bizarre feeling. Yeah, yeah, I have cancer. Aside from feeling tired, and some discomfort from the mass in my ass, I feel...normal. I don't quite see this as a really long, bad dream. But it still seems possible that maybe someone will pop up and say, "Whoops! We switched the lab results with someone else who has ass cancer! Your thing is something very benign and we'll just take that sucker out for you. No worries!"
That's not going to happen. I realize that. It's cancer, it's in my butt, and obviously we have to take steps to deal with it. But wouldn't it be nice, you know? If it was all just a mistake? If I woke up tomorrow morning and the PET scan people (technicians? operators?) called and said, "No need for you to come in! Take care now!"
Sometimes, for a little while, I forget. I'll get busy with the kids, or doing something around the house. Then I move my right arm and feel the Alien Port and there it is. Oh yeah, I have cancer. Or I'll wake up in the morning and it comes rushing into my mind. Crap, I still have cancer. I read in a book that a little time will pass and it won't jump on me like that. Ambushed by cancer. That might make a nifty CafePress t-shirt, you know, with a sad face or something.
Speaking of CafePress t-shirts, a wonderful and awesome friend of mine and her equally awesome family sent me a gift certificate to get myself some Fuck You, Cancer gear. As much as I love telling cancer to fuck off, I decided on some other cool stuff instead. I'll post pics when I get my goodies, but rest assured, they are the coolest.
It's quiet in the upstairs, which usually means my children are up to something. I hope you got that memo, rectal cancer. I'm still a mom, I'm still going to BE a mom to my kids, and if you slow me down too much I'm going to be super pissed. Even more so than I am right now. Just so you know.
Sunday, September 20, 2009
Ten points if you know where this quote is from....and go!! Don't be shy, there's a HUGE clue in there. ;)
The first time I saw Silence of the Lambs was either 7th or 8th grade at a sleepover birthday party. I'm leaning towards 7th grade. It doesn't really matter which, because I was waaaaaay too young to watch that and it scared the shit out of me. I think that was the same summer I also saw Candyman. What was wrong with us preteen girls, watching such freaking scary movies?? While I will be just fine never watching Candyman again, Silence of the Lambs is one of my favorite movies, and one of my favorite books as well. I've read it a bunch of times, it's possible I read it twice a year (maybe more). I know, I'm a freak.
When I read something though, I tend to read it really fast at first to find out what happens. Then if I liked the story enough, I'll go back and read again and again for details, things I missed, or just for enjoyment. Silence of the Lambs is one of those books that is so rich that you can read it again and again and find something new everytime. And this time around I happened to find that quote.
Thomas Harris is right. So often you don't get to prepare for life's happenings. Wouldn't it have been nice to find out about my diagnosis in a more peaceful way, maybe ahead of time? To have someone I trust take me on a calm walk and break the news gently, maybe give me some information, and let me know that in a couple years I'll be dealing with this, and to take time to prepare? Why is it that so often bad news comes from strangers in unfamiliar surroundings while you're laying on a table with your pants around your ankles?
Nothing against my doctor. He was so nice, and so apologetic and so awesome. But still. I didn't know him from Adam before two weeks ago.
So that's what I have to do. I have to get the information, make decisions, get myself and my family ready in the face of something frightening that I'm still coming to terms with.
Isn't it funny how such an unrelated book can have such a relavent quote?
1.) Please be on time for your appointment. (really? people show up late? What's wrong with people?)
2.) Nothing to eat or drink (except water) 6 hours prior to the test.
3.) Please be well hydrated with water on the day of your test.
4.) No candy or chewing gum on the day of the test.
5.) Wear warm, comfortable clothing: no zippers, metal buttons, underwires, etc
6.) ABSOLUTELY NO METAL ON CLOTHING. (yes, it's in caps on my sheet)
7.) DO NOT WEAR METAL JEWLERY (typo not mine, man)
8.) No exercise, vigorous activity, or chewing gum 24 hours prior to the test (hmmmm...what do they mean by vigorous activity? aahahahahahaha)
9.) Please do not eat complex carbohydrates such as pasta, potatoes, rice, cereal, or bread 2 days prior to your appointment.
WHAT?? What are you talking about?? What am I supposed to eat?????
No worries, no freak outs here. Don't get me wrong, I can eat bread, I love bread. One of my staples is peanut butter toast. We regularly have some sort of grain or pasta with our meals. It's not a huge stretch though for me to cut those things out for a few days. I'm gobbling up roasted squash, homemade refried beans, and this delicious veggie soup Aunt Karen dropped off tonight.
I could see this being a real stretch for a lot of people however. Eric did some googling and discovered that the sugars and insulin from carbs will mess with the effectiveness of the scan. For a complete explanation, feel free to hassle Eric over email or on facebook. Or, you know, we do encourage self sufficency. Feel free to do your own googling too. ;)
I've been thinking a lot about these tests and chemo and radiation, and wondering how the heck people decided to try all this in the first place. Who would think to radioactivate someone to see cancer cells? I just think that's so weird. How do you come up with an idea like that?
The down side of being a no carb vegan for a few days? There was not much to choose from at the restaurant where we ate breakfast this morning. This is totally NOT the restaurant's fault. The waitress was helpful (and appropriately apologetic), but the best she could do was canned peaches and pears. I could have had a salad, but that's not breakfast food, yo. So for the next couple days I'll be huddled around my hot bowls of soup, roasting veggies, and I will probably feel very healthy because of it. Veggies are good for you, and don't you forget it!
(And just so I don't completely scare anyone, meat and dairy are fair game as part of your PET scan eating plan, if you're into that sort of thing.)
And then there's this. Teh cancer. I can't think of a bigger life change at this moment. And honestly, a lot of it is freaking me out. How long does it take to get okay with a change like this? Unfortunately, I don't have the luxery of time. There is so much and it's coming so fast. I understand the need for speed, but I don't like it.
I can't pin down one big thing that's bothering me either. I know because Eric asked me last night. It's really a little of everything. A lot of everything. What questions do you ask if you don't know where to start? How do you figure out your biggest worry if all your worries seem to be the same size? The minute I start to think I'm okay with one thing, whoops, there's one more thing on the radar! I'm really lucky that I have a husband who probably knows everything there is to know about rectal cancer and treatment and surgery, but instead of laying it all on me at once, he parcels information out in little bits and pieces.
I don't know. I'm going to be okay. I think. It's just a weird place to be. And did I mention I don't like it? I DON'T LIKE IT.
Saturday, September 19, 2009
It's sad though. I sew almost every day, or at least I did before the craziness started. What, someone needs a pair of navy shorts? No problem. Suddenly your pants are all too small? I'll just whip you up a few pairs. We need a birthday gift? Pajama pants!
I can go get the sewing machine of course. It's in the basement, not in Siberia. But anyone who has seen my sewing area knows that it would be a job to clean it up. I doubt that's something I will feel like doing. I think I might get out an ideas notebook in case I see any cute patterns or tutorials.
Friday, September 18, 2009
Chemo, radiation, surgery, colostomy bag, losing hair, getting sick, Alien Port...I can talk about a lot of aspects of this shitty cancer experience and I'm mostly okay. Mention Eli and weaning and that's when I lose it. As much as my rational mind knows that overall this is going well, and he's adjusting, it doesn't matter. This is breaking my heart.
It's so different from the way Reese was weaned. She was a little over three when I decided (after much thought, I might add) that I wanted and needed to be done nursing her. Eli and Reese tandem nursed for a long time, and Reese was down to once a day. Her weaning was slow, it probably took at least a month of talking about how she was big and didn't need to nurse anymore, and very gradually cutting the length of time she nursed. It was peaceful.
This weaning does not feel peaceful. It's not anything at all like what I thought would happen. I expected to be bribing Eli with cars sometime after he turned 4. I expected that we would have time to make a transition to a different kind of relationship.
I don't know. I had a lot more to say, but I'm fried now. Bottom line, this isn't ideal. That's a shocker of a statement, huh?
Sunday has to be the last day Eli nurses. Tuesday is the PET scan and apparently I'll be so freaking radioactive afterwards that I'm not supposed to even hold the kids for 6 hours, and no nursing for 24 hours. If chemo is going to be starting very soon after the PET scan results...I thought it would be better to pick a day before the PET scan.
Flowers from my mom and dad:
Awww, and there's my serger baby in the background! The picture doesn't really do the flowers justice, they're beautiful. I suspect we almost didn't get them though. I happened to be walking by the front door when I noticed the shadow of a person outside. Our doorbell doesn't work, and I guess people can't figure that out so they just stand out there and keep ringing. Don't worry, Eric fixed it last night, so ring away. Thanks again for the flowers!!
Here's yesterday's sewing endeavor, pants for Eli. This is an owl print waffle knit. I will never again buy waffle knit. It's so stretchy and annoying to sew. Eli calls them Olive Pants, and I think that's their only redeeming quality. I hope he wears them, at least to bed. I suppose if he doesn't, no big deal. Pants are a fast project, and the fabric was on 50% off clearance.
And probably the biggest surprise of yesterday:
See, this is what happens when I go up to take a bath. The kids get all crazy with the razors and poof! Dad's hair is gone!
Seriously though, I had no idea this was going on while I was soaking in the tub. It was one of those moments where I felt so overwhelmed and so much in love with this man. I cried. I'm tearing up right now.
Thursday, September 17, 2009
2. Sew something. Anything. Two scraps of fabric together. I actually cut out some pants for Eli this morning, which will go together like whoa the second I turn on the serger.
3. Give my kids big hugs. They deserve them. And so do I.
4. Give my husband a big smooch. He deserves it. And so do I.
That's all. :)
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.
Wednesday, September 16, 2009
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
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.
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
Tomorrow is "Let's Cram Every Test You Need Into One Day" Day. Sounds exciting, right? Here's what I get to do tomorrow:
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
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 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
It always is
And it always will be
This is The E.N.D.
And the beginning
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
Of course I hauled the kids over to the source of the music, a grungy looking young kid sitting by the sidewalk, strumming on his guitar and singing. We sat down and listened for a few minutes. I sent Reese up with a dollar for his guitar case. I actually sent her up with another dollar after that and wished I could have given that kid $20 because he really made my morning. So Nirvana singing grungy kid, if you ever stumble across this blog please know you put a smile on my face. And my kids liked your music too.
No real point to this, just a very nice experience in the midst of lots of really craptastic experiences.
Friday, September 11, 2009
The best phone call today though was from my very good friend and fellow LLL leader Maggie. She just wanted to check up on me, see if I need anything, and ask if I had any questions. She was on my list of people to call, because I did have a question about nursing after the colonoscopy next Tuesday. Then while explaining that I was down to twice a day anyway, I of course choked up and started crying. Then Maggie said, "Sheri, you're a good mom. You are really a good mom."
What? My kid is cranky and overtired because it takes so much longer for him to go to sleep without nursing. He's frustrated that he is being cut off of his biggest source of comfort. He's complaining he's hungry all the time because before this he nursed all the time and didn't eat all that much. So again I say, WHAT?
Maggie said I could have just weaned cold turkey (for those not in the know, this means basically just cutting a kid off, no warning, just done). Lots of moms in my situation have gone that route. Instead, I'm trying as hard as I can to balance my needs (chemo, etc) and his need to nurse and be weaned in as gentle a way as possible. And she's right. Her being right doesn't make our experience any less difficult. Breastfeeding has been a huge part of my life for the past 4.5 years, of course it's going to be hard.
My little guy is a trooper though, and we're gonna be okay.
I want to donate it to Locks of Love. I can't imagine NOT doing that, especially now.
I'm not sure I'm ready to sport a short hair cut. The whole losing hair thing is so weird. I keep wondering bizarre stuff, like will my hair grow back in the same color? Is my leg hair going to also fall out? I have to admit, the idea of not shaving isn't so bad. Will my hair still be curly? It was straight before children, and I'm just finally getting used to it being so curly. I'm going to look goofy bald, I just know it.
That's lame stuff to worry about in the scheme of things. I realize that. Fuck you, cancer, for forcing me to cut my kick ass long red hair before I was ready. And you better not screw it up. I'll be pretty pissed if you do.
Thursday, September 10, 2009
Deep down, I know he's going to be okay. He won't be scarred. He's had 3 years and two months of the good stuff. That's way more than most babies get in the United States. I just didn't want it to end like this, I really didn't.
I went to see my family doctor on August 30th, and she referred me to my current doctor. After much phone tag thanks to a mistake with our phone numbers, I got an appointment to see my current doctor. I saw him on September 8th, and after an initial exam, he suggested a biopsy because he suspected cancer. We were told it might take a week to get results, so I was surprised to get a call the next day (September 9th) with a diagnosis and outline for treatment.
When things start happening so fast, it's overwhelming. I'm still trying to wrap my mind around CANCER, I can't even hardly think about treatment.
So diagnosis: rectal cancer, which has spread to the anus (yeah, lovely, huh?)
Treatment: chemo, surgery (to remove rectum and anus)
Obviously there are little details but it's hard to get all that when you're talking to the doctor outside the Oshkosh library while your children are being watched by a friend (a million thanks, by the way). You get stuck on words like "cancer," "chemo," "colostomy bag." The plan is to have Eric also talk to the doctor. Having us both hear and understand in our different ways will be a good thing.
The plan right now is to get some tests done. I go in on September 15th for a CAT scan, chest xray, blood work, and colonoscopy. My doctor also wants to put the port in for chemo. The following Tuesday, September 22nd, I'll have a PET scan. Sometime very shortly after that I'll start chemo.
So that's where we are, and the beginnings of where we will go.
Did the doctors catch it early enough? I don't know. I went to my family doctor in what I feel was a timely manner. Things weren't right, home remedies weren't helping, I went in. She was fast to refer me. Maybe I'll be better able to answer that question after the tests. Maybe it's neither here nor there. I'd really urge anyone who has anything amiss with their ass to go get it checked out. Eric, what with all his reading, told me that 2% of people with rectal cancer are under 40. It's a common cancer, but uncommon in my age group. Listen to your body, listen to your gut. I felt in my gut that something wasn't right, that's why I went in.
I'll post more as I know more.
I continue to feel so amazingly overwhelmed with the support, thoughts, prayers, and offers of help, from family and friends all over the world.
This early morning I can't help thinking about all the things I have to do, big and small. Reese wants to make applesauce so I need to find a recipe. A trip to the library is planned for this morning, books will have to be gathered. If I'm going to the grocery store, we need a list. When the doctor calls, I have to remember to ask how long my appointment on Tuesday will be so we can figure out who will watch the kids. I have to wean Eli in the next 7-10 days. I'm going to cut my hair soon, probably this weekend, and I want a salon that donates to Locks of Love. I should call my sister.
There are few moments during the day when I think about these things. In some ways our lives have ground to a halt. Plans are in limbo, we don't know what's going to happen in the weeks and months ahead. But day to day things don't stop needing attention. I just had to pause this blogging to go get Eli back to sleep. That's exactly what I mean.
Anyway, I lost my train of thought, Reese is suddenly starving, and it's time for us to start our day.
Wednesday, September 9, 2009
The title of this blog is from one of my favorite movies, Superbad. I know, I know, swearing and depravity and hijinks and alcohol in Tide containers. Really, if you haven't seen it, it's a pretty good movie. Hilarious, especially when you're feeling happy from your Malibu and Cherry Coke, but still quite funny sober. Anyway, one of my favorite parts of the movie is Seth explaining to his Home Ec teacher why he doesn't want to work alone, and he ends his tirade (in which he basically calls Home Ec a joke, no offense) by saying, almost as an afterthought, "I'm sorry for cursing." I always laugh at that part. I think we might even have just that part somewhere on the DVR, just so I can watch it over and over again.
I suspect in the next weeks and months, I'll need to rely on things I find humorous. Today I found out that I have rectal cancer. What the hell, right? I don't know about you, but rectal cancer has never been a cancer I worried about. Skin cancer? As a redhead, I think I'm obligated to worry about that. Breast cancer? I kind of think most women have fleeting worries about this. So this whole crazy thing came out of nowhere, absolute blindside.
This blog will be my adventures, my thoughts, a record of what's going on. Along the way I'll share more about who I am, about my family, about our life. It's evident that something as huge as a cancer diagnosis can rapidly consume one's life, but that's not all I am, and it's not even the tip of the iceberg of my awesome family.
To friends and family who have sent well wishes, thoughts, and prayers, thank you so much. If I didn't respond to you personally, you probably made me cry (way to go, man...kidding) and then I got distracted. I appreciate everyone in my life right now.