Saturday, October 31, 2009

I always think of totally awesome stuff to post...when I'm laying on the couch...sitting on the can wishing I had better reading material...driving in the car. Then I forget it. Must be chemo brain! Chemo brain is a lot like mommy brain, in case you were wondering. Only I'd rather have mommy brain. I do feel rather boring lately. I listen to interesting podcasts, but fall asleep halfway through them and forget most of what I heard. I would read some stuff, but find it hard to concentrate for very long and can't seem to find anything good to read. Right now I'm rereading the Twilight series. Again. For probably the third time in a year and a half. Oh! I'm also reading an interesting book about fois gras (I belive it's called The Fois Gras Wars). I'd cook some interesting vegan food and post recipes, but not only am I too tired to stand around in the kitchen, food either doesn't taste good or gives me a stomach ache.

Oh hey, here's a fun fact: before surgery, I have to do the colon prep. I know, because I looked it up on teh internets. I don't know if I can do it again so soon. An online friend of mine said she took pills, I might check into that.

I don't know. I feel like a lame-o so much of the time because I'm parked on the couch so much. Stupid radiation and chemo. Stupid cancer. Sigh.

Friday, October 30, 2009

Excuse me?

Well mother fucker.

It was an exciting day at radiation today. The Radiation Girls were all chipper with me, saying I'm almost done, and they thought I was done on Tuesday next week. I was so excited, thinking that if I was feeling okay on Wednesday that I'd take the kids to La Leche League in Oshkosh because I feel like we haven't been there in ages.

Then they came back in and said, "We hate to be the bearers of bad news, but the Fry Doctor added on three more sessions, so you're done on Friday next week."

I just about burst into tears right there on the table. Mad tears. At least the doctor could have told me this when I saw him on Tuesday. Or if he didn't decide until he saw the xrays on Thursday, he could have called. What the hell? I thought that was a pretty shitty way to find out.

So I managed to get out of the cancer center (not without an ambush with the nutritionist, who I was very short with...sorry, nutritionist, I had to pee and I was pissed). I cried in my car for a little bit, ironically one of the songs I like and posted lyrics for was playing, Run This Town.

I'll just be honest here and say that the biggest reason I've been able to keep it together and not completely freak out is that I had The End Date. And The End Date is now pushed back three days. Shame on me for not being flexible, huh? I should know by now with this whole cancer thing that dates and appointments seem to be fluid. Changes may occur without warning.

I'm still pissed. But it's Friday, I have two days off, and I think I'm going to demand french fries this weekend.

Who's counting down with me? FIVE more. Sigh.

Soooooooo tired

You'd think that after so many weeks of this radiation and chemo business, that I'd be used to how tired I can get. Stupid little things make me want to crash on the couch for an hour. Example? Making the kids breakfast put me on the couch for 45 minutes. I would fight through the tired, that's what I've been doing since Reese was born (she was not a sleeper...still isn't! haha), but if I try to do too much, I get a headache and nauseous and pretty much HAVE to lay down. I briefly considered throwing in a load of laundry, but bending over hurts, and it hurts more when I'm without aloe, as I must be cream and lotion free for a little while before my treatments.

But for someone who used to think nothing of cleaning up the kitchen, loading and running the dishwasher, getting myself and the kids dressed, and throwing in a load of laundry...all of this done in the span of maybe 45 minutes...this is hard for me. I can't take care of my family the way I used to and it's frustrating. I got fired from a job I enjoyed and hired for a job that I wouldn't wish on anyone.

For now, I'll watch other people pick up my slack, but you just wait. Before we know it, I'll be back to cooking (which I really miss) and cleaning and all that jazz.

After today...THREE more fry sessions!!!!!!!

Thursday, October 29, 2009

Screwy genes

That's right! Mine could be screwed up in one of two ways. There's the sporadic "So Sorry About Your Shitty Luck" genes that are not in fact passed on genetically. I hope I explain this right...showing the little pictures the Gene Whiz drew would probably be better. Should I preface this by saying that I'm not a geneticist, and I certainly don't play one on tv? Anyway, there are two copies of information in cells. Events in a person's life can cause these cells to be altered, and when they're altered too much they don't work the same way anymore. This is how many people develop cancer, but it usually takes a lifetime for this to happen. That's why most people get cancer later in life.

The other way cells can get screwed up is genetically, such as by faulty cells being passed on down a family tree. This could be Lynch Syndrom or what have you.

So the plan is to test some of the cells from the biopsy and see what's what. I have to say, I was surprised that those rectal tumor cells are still hanging around someplace. And I'm also glad they can be of use for something other than diagnosing cancer, because that biopsy hurt like eight bitches on a bitch boat (bonus points if you know where that phrase is from...hahahaha). The cells have to take a trip to the Mayo Clinic, so we won't have results for a couple of weeks.

Until then, let's get back to focusing on the end of radiation, which is fast approaching (four days!!), shall we?

Wednesday, October 28, 2009

Waiting sucks

It does. At least it does when you're wearing a skimpy hospital gown (well, two actually, one in the front and one to cover the back) and you have to pee. I've been spoiled by my radiation girls, but today they got a bunch of new patients so things were kind of crazy. One of the radiation girls told me all the slots they have are filled until noon now. I said, "Well, you're almost done with me!" And they laughed and said, "More like you're almost done with us! I bet you're glad!"

At any rate, they were fast and efficient as usual, so it wasn't that terrible that I had to wait until my scheduled time.

The plan is to rest as much as possible today. I was yawning like crazy after radiation. It still shocks me how tired I get. My butt feels kind of tingly, and not in a good way. Those of you on Open Sore Watch, nothing yet. And yay for that, man.

Five left. F. I. V. E. Not that I'm counting or anything. ;)

Tuesday, October 27, 2009

Who wants good news???

I do, I do!!! My last radiation treatment will be November 4th. Whoohooooooo!!!

So six left. Doable, I think.

There's some confusion about when the surgery will take place. The Fry Doctor thinks 4-5 weeks after chemo is done, and the chemo doc thinks I can include two weeks of chemo into that rest time. I suspect it will depend on what the surgeon prefers.

I'm not sure how I feel. On one hand, let's just get all this shit done and over with. Please. But then again, I've mostly opted NOT to think about surgery at all, or the outcome. My rational mind knows the tumor and surrounding tissue (ie my rectum and anus) need to come out. Is it stupid that I keep thinking about missing my anus? I never thought I'd be all weepy about my anus. I mean, it's there, it's doing its job. We don't argue, my anus seems to be a nice, um, organ? Muscle? It seems kind of...sad that I won't have it anymore. And scary. A whole new lifestyle has been dumped into my lap out of nowhere.

It's not that I don't think I can handle business. I know I can. Despite my last few weepy, feeling sorry for myself days, I'm tough. I am absolutely going to keep on keepin' on. This whole thing has been like walking through a dark tunnel. There are twists and turns and ambushes, most of the time I feel like the flashlight flickers and cuts out too much. I want to get to the light at the end of the tunnel, of course, but what will the ramifications be exactly? That's what can be really hard sometimes.

Anyway, overall, it's awesome news that I'm for sure almost done. The Fry Doctor mentioned that I should watch out for peeling skin around my anus. Well, isn't that guy just so full of fun and happy news?? It apparently happens in about 20% of the rectal cancer patients he sees. Since I'm such an aloe fanatic these days, perhaps I'll escape that side effect too. The diarrhea is bad enough, thanks.

Speaking of, the Fry Doctor again talked about ways to control the disgusting mess coming out of my ass. He mentioned the BRAT diet, and kind of laughed and said, "And I don't mean brats." As in the meat. At that point I was thinking more about getting to the bathroom than his corny jokes. He's such a card.

And I'm already feeling better and I've only had two doses of cipro, so that's good too.

Monday, October 26, 2009

Cipro! Glad you could join the team!

Well, not really. The nurse called me and I do indeed have a UTI. You know, it's sucky enough to deal with cancer. Now I have to deal with other ailments on top of that? I thought the same thing when my ear got plugged up last night because the last thing I want to deal with is unplugging my ear. Or a UTI. Or whatever. One thing at a time, man.

So I guess I don't get the good drugs that turn my pee orange. Bummer.

I'd like to curl up with a blanket and not move.
It felt pretty good to be the ambuser instead of the ambushee today. And how convenient, the nurse I normally see was standing by the registration desk.

So she took me to an exam room and I yakked at her about the vaginal bleeding. It was most likely caused by...well, that's none of your business. But it's not a concern. The pee pain could be a UTI, so I gave a sample. I'll see the Fry Doctor tomorrow and we can talk about it more then. Did you know there's a drug I can take for painful urination though? It turns your pee orange. True story.

Overall, not much to report.

Six left!!!!!!!


I cried a bunch last night all over Eric, just some "It's not fair" and "I'm sad" tears. And maybe some "I'm tired of holding it all together" tears too. I feel better this morning. Crying is good, I think.

Oh man, Eric is reading the kiddie cancer book to Reese and Eli. It's a storybook called When Mama Wore a Hat. I can't read that damn thing without crying my eyes out.

Anyway, my plan today is to grab a nurse and ask about a couple side effects. Awwww, you want to know what they are? That's so sweet! The one I can't seem to find any information about ANYWHERE (seriously, books, teh internets) is the annoying vaginal bleeding. Nope, not my period, just random bleeding. I vaguely recall one of the doctors asking about it last week, so it's probably no big deal. The other crappy thing is some pain while urinating, which I was warned about, but in the interest of making sure it's not a bladder infection, I thought I'd see if the nurse thinks it can wait until I see the Fry Doctor. I usually see him either on Tuesday or Thursday.

So I'm off to drink a bunch of water and go get fried. Happy Monday!

Sunday, October 25, 2009

Sunday night

I'm staring down what I really really hope will be my last full week of radiation. The weekend was, hmmmm, okay. After parking myself on the couch for most of Saturday, I felt somewhat more rested today. The diarrhea backed way off, so of course things have swung the other way. Anyone else tired of hearing about my bowels? Because I know I'm tired of this ridiculous balancing act.

I don't always know what to say when people ask me how I am. On one hand, I feel greatful that I have people in my life who do ask, who genuinely care about how I'm doing. On the other hand, I honestly don't know what to say. Should I say, "Well, my vag is itchier than hell and my ass burns, but other than that..." How much do people really want to know? So I usually choose to go with a safe answer, "Oh, I'm hanging in there, mostly just tired." That's true too. Maybe it all stems from people not knowing what to ask and me not knowing what to say. It must be super freaky to know someone like me with cancer. I hang with moms with young kids, and it's scary to think that cancer is a possibility.

And yet it's still so great to see people that I used to see on a more regular basis. And maybe it's good for them to see me too, that I'm still plugging away, that like someone said today, I'm still Sheri. I'm still cracking smartass jokes and laughing and living.

I'm hoping for this week to go by super fast, if only so we can get to the Halloween candy on Saturday. :)

Friday, October 23, 2009

Seven is my favorite number

No really, it is. I was born on 7/01/77, so my favorite number has always been seven.

Seven also happens to be the number of radiation treatments I have left, as of today (as long as I counted right, and if I didn't, I'll be blaming that on chemo brain, thanks). I'm looking forward to the weekend to hopefully heal and rest. And I'd be lying if I tried to say I wasn't apprehensive about next week. It seems like every week has been just a little bit worse than the week before, in terms of side effects. Every weekend I was able to recover just enough so that the beginning of the week was pretty okay. But I can do anything for seven days. I think.

The Radiation Girls today said, "The Fry Doctor wanted us to remind you to come to your treatments with a full bladder." (They didn't really call him the Fry Doctor.)

I replied, "Oh I know, and I have been. In fact, I have to pee pretty badly right now."

Then we got all jokey and laughed about having to lay on a hard table with a full bladder. Those girls are so great, I think I'm going to bring them some Halloween candy next week.

I guess I didn't really have a lot to say today. Mostly I'm just killing time waiting for my rice to cook. After that I will be laying on the couch watching Harry Potter and the Order of the Phoenix. Where are my children, you ask? Locked in a closet. In the basement.

Just kidding. They're hanging out with some very sweet friends of mine at the Children's Museum today, and then they're all going to lunch. That's the best thing ever on a Friday because to be honest, I'm wiped out. There would have been a goodly amount of tv watching, and there still might be later this afternoon.

So Happy Friday, everyone!!

Thursday, October 22, 2009

Chemo tube drama part 2!

All right, there was no drama today. I talked to one of the chemo nurses about the bubbles and she said it happens all the time, and it's no big deal, not to worry. Well all right then.

Drama aside, it was kind of cool to see how fast and far the chemo travels in the tube (because you could see it while we were on chemo tube watch last night). I always wondered about that.

And some update delight! I saw the chemo doc today, and he's pleased with how things are going (and no doubt my lack of side effects). He still wants me to do two weeks of chemo after radiation is done. We also talked a little about the chemo after radiation. It will be a different kind of chemo, one of two options, but he mentioned fulfox. I haven't looked that up, I kind of don't want to deal with it yet because it's far away and I have bigger things (like surgery) to think about. It's good to know there's a plan, and I'm sure my research-loving husband will do his thing when he has a chance.

The chemo doc and I talked more about my Ipod than anything medical, and that was fine with me. He's very nice and personable. And he reminded me to take my B12, which I sometimes (okay, often) forget about taking.

I am just exhausted today though, and I was when I got up this morning. I keep thinking to myself, one more treatment this week and two days off. And after tomorrow, 7 radiation treatments left. I'm thinking End of Radiation Party, complete with french fries and shots of tequila. Who's in??

Chemo tube drama!

In the midst of my whining about diarrhea, I totally forgot about the chemo tube drama last night!

So I was trying to get the kids ready for bed and had to bolt for the bathroom. While I was hanging out in there, I happened to glance at my chemo line. I do that periodically, trying to SEE the chemo (it's clear, this is obviously a hopeless cause, actually seeing it), wondering if it's really in the tube, thinking that maybe it's just a big fake out. I was surprised to see a series of bubbles in the line. Now I watch TV, man. Air bubbles in a line going into your body is NOT GOOD. After showing Eric, we decided a call to the help line was in order. I laid down with Eli and Eric made the call. I'm really glad he did, by the way. I'm pretty sure I would have freaked out trying to explain bubbles in my tubes.

The help line lady wasn't barrels full of helpful, mostly because Eric didn't think she really understood what exactly I was wearing, how often the chemo pump gets refilled, etc. At any rate, she wasn't too concerned about the bubbles, but did suggest that if they got past the twisty thing, we should probably get it checked out at the hospital.

This started Chemo Tube Watch 2009. As the bubbles slowly moved towards the twisty thing, Eric watched the clock so he could tell me when the pump would go off. The bubbles disappeared into the twisty thing and didn't ever come out the other side. It was the weirdest thing.

And we're left with a mystery. Where did the bubbles come from? Why do they disappear in the twisty thing? Are bubbles in the line normal and I just haven't noticed them before? All fantastic questions for the nurses I'll see when I get my bag changed today.

Who says cancer isn't exciting?

Wednesday, October 21, 2009

Are you sure you *really* want to know?

All right, Fry Doctor, you big jerk. I concede. Diarrhea has started, and I'm pretty sure it's not a result of my obsessive fiber habit.

Hey, I asked at the beginning if you really wanted to know!

If I close my eyes, I can imagine I'm in Cancun...about a day or so after we visited the cenote (where we're pretty sure we picked up the bacteria that caused our Montezuma's Revenge). It's better than hanging out in my own bathroom, that's for sure. The good news? There won't be fiber water hanging around on the counter. Maybe that's only good news for Eric? ;)

So yeah. Pretty gross, huh?

Despite that, it was a much better day today. I very much appreciate everyone's kind messages and thoughts, it really does mean a lot to know that people are thinking about me. Everyone has bad days. You have them, I certainly have them. To be honest, I have way more good days than bad, thanks to family and good friends. I just think that the only way I can continue to be strong is to let that junk out sometimes. I hope that makes sense.

Tuesday, October 20, 2009

Deep calming breaths...

The morning started out just a tad rocky. Sometimes I just get tired of dealing with appointments and other people's schedules and going out every morning. As if I didn't go out just about every morning to take the kids someplace before, right? Radiation is like going to a job I really don't like. I find myself driving slower (sorry other drivers on 441 this morning...) and sitting in the parking lot until the last minute (or until I really really have to pee). I know I have to go, but ugh.

I just feel like everything sucks today. And you know what? I think that's okay. Because it *does* suck. There are so many frustrations, like waking up tired.

Anyway, the morning didn't turn out to be too bad. I saw the Fry Doctor today and got to complain about the ridiculous itching. Guess what it is? The hair follicles between my buttcheeks are irritated. Call me crazy, but I find that giggle-worthy. Awwww...the poor hair follicles don't like radiation! And could we call this a new low? The Fry Doctor and his nurse peering at my asshole to determine the problem? Rectal cancer is just full of wacky moments, people! So the Fry Doctor suggested switching from the aloe to hydrocortisone or benedryl cream.

Hydrocortisone cream works, by the way. Itching gone! Hooray! That alone improves my mood.

After all that nonsense, I had to deal with some scheduling.

I don't think I've talked about this much, but it was suggested that I strongly consider genetic counseling. It's unusual for someone my age to have rectal cancer, and unless we have a strong family history of it, there's a possibility that I have something called Lynch Syndrome. Lynch predisposes the lucky genetic carriers to all kinds of cancer. Well, yay!? And not only yay for me (and I hope you can read the sarcasm, because I'm laying it on pretty thick), but also for my children. If I do have Lynch Syndrome I do have some options to protect myself from the more common cancers it can cause, mainly by hacking out some organs I don't need at the moment. Like my ovaries and uterus. I have mixed feelings about that whole can of worms, and I'm choosing NOT to talk a lot about it until we have more information. It's just one of those things that really upsets me. So yeah.

Anyway, scheduling. So I had to work with the chemo scheduler to make sure the appointment we have for next Thursday will be okay. Everyone at the cancer center is nice, by the way. I really can't say that enough. With a little back and forth, I got things set up so I have another fun filled day next Thursday.

Now if I can shake this headache, the rest of the day will be peachy keen!


I am pretty fucking tired of everything today.

Saturday, October 17, 2009

Life's a game but it's not fair
I break the rules so I don't care
So I keep doin' my own thing
Walkin' tall against the rain
Victory's within the mile
Almost there, don't give up now
Only thing that's on my mind
Is who's gonna run this town tonight

Put that in your song lyrics pipe and smoke it. And have a fantastic Saturday!

Friday, October 16, 2009


13 down, 12 to go, people!!!!!

Well, that's contingent on the Fry Doctor not wanting to do more. And that will depend on what the tumor looks like at the end. I suspect if it could be lasered more and I can handle more, there might be more? I don't want more, but if it means a more successful surgery because there's less to hack out, then so be it.

Today was uneventful, but holy crap, I was tired. My children were allowed to watch some Magic School Bus episodes before lunch, which I'm considering to be educational. They learned about eggs and stars. Go ahead, ask them something. Then after rest time, I bribed them to help me pick up the living room in exchange for a freaking Disney movie. Yeah, that's how tired I was. We watched Winnie the Pooh, and since we're also reading the book, maybe that could be educational too? Hahahahaha, all right, probably not. It is one of the not-so-scary Disney movies however, so I mostly felt okay about them watching.

Thursday, October 15, 2009

Oh man

Today was not an ambush. I was fully aware that I would get my bloodwork done at 9am, have radiation, and see my doc at 10:15am. But the waiting. I was done with bloodwork by 9:30am, and of course, the Radiation Girls were all ready for me. Part of me wants to start arriving earlier and earlier, just so one day I can catch them off guard. Anyway, I was all done there by 9:45am, which if you're keeping track means half an hour wait. Not a big deal, I remembered my TurtlePod and got in some quality Jason Lewis and Stupid Cancer radio time (two separate shows, by the way).

I need to confess something though. Sitting around in the chemo waiting room is depressing as hell. I feel bad thinking that. I was the youngest person there by at least 15 years. Seriously. Maybe even more than that, but I suppose I'm getting up there in age myself (haha). It was just weird and scary and I didn't like it. Eric and the kids hung around in the waiting room for part of the time with me, and that was better. I hope this doesn't make me a jerk.

Anyhoo, I didn't see my doctor. I saw one of his nurses. My bloodwork came back with my white count on the low side (mine was 2.2, they like it to be 4+). However, the nurse looked at the breakdown and the ratios/levels were good overall, so it's just watch and see. It's possible (probable actually) that the radiation is hitting some bones, which would affect my white blood counts. That's my non-doctor understanding. There's not much else to report. The nurse talked about side effects, emphasizing dry/cracking hands. At one point, she said, "I've seen some people's hands that looked like someone cut off a layer of skin with a knife." Oh really? Well thanks for that bit of encouragement. I suspect she was trying to scare me into using lots of lotion, which admittedly I am bad at remembering to do.

I waited about a thousand hours for someone to be free to hook me back up to my chemo pump. A very nice nurse snuck me in. The little two seater lab room was busy, so she just had me sit in the chemo lounge, which is just a big room with lots of recliner chairs and people hooked up to chemo bags. I pulled my shirt down, and she said, "Oh, you don't have to pull it down that much, I don't want you to feel exposed." I replied, "I was a nursing mom for a long time, up until about a month and a half ago, this is nothing." She kind of laughed, and told me she nursed her babies too, and shared that she got a lot of flack for nursing her 3 week old baby at a wedding.

And then she said, "That must have been a fast weaning for you." That's all it took for me to tear up (I'm tearing up right now, actually). I think that eventually I'll get to the point that it won't make me cry to think about or talk about Eli's weaning. Maybe when he stops asking to nurse (which he still does about once a day). It still pokes at my heart, and it makes me so fucking mad and sad that our weaning was taken away like it was.

All in all, it was a difficult morning. I was very glad that Eric took the day off so I could rest this afternoon. And tomorrow is Friday, which means I have two radiation free days coming up!

Wednesday, October 14, 2009

The other nutritionist ambushed me today. I was all, "I'm really sorry, but I need to find a restroom NOW." I had to freaking pee like crazy because it was x-ray day and I totally forgot, so of course I overdid it on the water. So the nutritionist was nicer and in my not so humble opinion more knowledgeable than the one I talked to last week. We laughed about vegetarians who eat fish and how silly they are. She was really glad I'm taking probiotics and said the stuff I'm doing sounds great. So go me! I'm capable of feeding myself!

I think the Radiation Girls were very relieved when I didn't bleed all over their table. Hah.

On the way home, I was rocking out to the Black Eyed Peas and suddenly the sun came through the clouds and I started to cry. I'm just so overwhelmingly grateful. Yeah, this situation sucks, and it's probably going to continue sucking for a while. But you know what? Things can always be worse. My children are healthy. My husband loves me and takes care of all of us, and I know that's not easy. My family and friends have reached out in so many ways. We have a place to live and food to eat. And I really think things are going to be okay.

That doesn't mean it's not scary and sad and frustrating and terrible. It's all that and then some. There are a lot of questions still, lots of what ifs and how are we going to manage THATs. Days are long and I wish I could do all the stuff I used to do. One day at a time, right?

Big hugs everyone. Even if you don't think you need one, you probably do.

Tuesday, October 13, 2009

Excitement at the Cancer Center!

Oh it didn't start off exciting. I actually found a parking space right away, didn't have to wait for a changing room, and of course the Radiation Girls were all ready for me. I laid on the table, got zapped by Dr. Evil's lasers, and when I got up one of the girls goes, "Oh my gosh!" I looked down and there was a nice sized blood spot on the front of my stylish gown. After some investigating, we realized that the twisty parts of my tubing came apart. The Radiation Girls scrambled to find some gloves and helped me clamp off the tubing. I don't think they deal with blood very often because they both seemed kind of freaked out.

It turns out that today was the Fry Doctor's ambush day, so the nurse said she would walk me to the chemo side to get the tubing fixed. Keep in mind I'm still in my stylish gown, and I have to pee. And I mean, I really really had to pee. So I changed my clothes and we went over. The nurse was all, "Oh my gosh!" She ushered me into one of the lab rooms and started taking things apart on the tubing. The line had to be flushed out, and the twisty thingies replaced. Keep in mind, I still had to pee. The chemo nurse decided to take the chemo pump and long tubing to get them cleaned up, I made a break for the bathroom, and then got things hooked up again.

I walked over to radiation looking like a freaking gunshot victim. I wanted to assure the people in the waiting room that most patients don't come out of chemo with blood all over their clothes.

After all that, I had to wait around for the Fry Doctor. His nurse asked me about side effects. There really wasn't much to tell, since I just saw the Fry Doctor last Thursday. The doctor started asking me questions like, "Have you noticed any pain in your feet?" "Are you noticing swelling in your legs?" and "Do your hips or tailbone hurt at all?" What? MORE side effects? Then he seemed puzzled that I'm not experiencing more side effects. Perhaps I'm just the wild card, always doing the unexpected. Watch your brake lines!!

Ten treatments down, bitches!!! I'm considering a party on treatment day 13, but we shall see. ;)

Monday, October 12, 2009

So I read a lot of cancer books. I know, they make me irritated most of the time, but perhaps I'm a glutton for punishment. There is good information in some of the books I've found. One book has personal stories interspersed with the information, especially on the subjects of side effects. I read that this one woman imagines hundreds of angry bees stinging away the cancer while she has her radiation treatments.

Bees? Let's think this through. The tumor is in my rectum. Forming a mental picture yet? Do I really want to think about hundreds of bees in my rectum? And of course today during my own treatment, this was all I could think about. Ahahahahahahaha.

I prefer to think about radiation as lasers. You know, Austin Powers Dr. Evil lasers. I think Dr. Evil's lasers would be millions of times more powerful than bees. And who wants to think about an assful of bees?

Here's some TMI for you (warning! I'm going to talk about lady troubles! Men, look away! I mean, only if you want to.):

I totally got my period over the weekend. After all the promises that I wasn't going to have a period during treatments, and possibly never again, I was a little miffed. Apparently my uterus is stubborn and will do what it wants. I found that interesting. Now it could be a matter of timing. I was due for a river of blood anyway, if I'm counting from the mini freakout period I had right after my diagnosis. I was on the weekend treatment retreat, and I'm only 8 treatments into radiation (that's 1/4 of the way done, if you're counting, which I am). I prefer to think of it as my body saying a big Fuck You to cancer, and reassuring me that it's doing everything it can to fight back and all the while doing business as usual. Awww, thanks, body! I'll eat some broccoli for you later!


So yeah, side effects. I should start a betting pool, like one of those weirdo square boards with the football scores on them. You know, like a grid? I don't pretend to understand how those things work. That's what I feel like, waiting for side effects is like rolling dice. What's going to come up? And the harder question, what am I most leery of rolling?

Sunday, October 11, 2009

Let's talk about...

being tired. Have I talked about this? I can't remember, probably because I'm so tired. Hahahahahaha. Hah. Ahem.

Anyways, thus far, being tired is one of the only side effects I've had the displeasure of experiencing. And it's not a tired that goes away after sleeping all night. When I wake up in the morning, about an hour later I feel icky and the only thing that helps is laying on the couch. I typically have just enough time to make tea and toast for myself, hot chocolate for the kids, and get them a quickie breakfast snack. Isn't that crazy? And I think I could take three or four naps a day and still feel tired.

Things like being at the computer make me tired. I can tell when I push myself too much because I get nauseous and headachy. Most of the time just reclining on the couch makes me feel better. For someone like me, doing nothing is hard. I'm not used to just sitting around. I'm not used to staying at home, missing all my usual groups. I think if I didn't have so many awesome friends volunteering to help watch Reese and Eli, it would be very lonely.

This has definitely been a shift in thinking. Instead of "Where do you want to go today?" it's more "What can we do while I'm hanging around on the couch?" It sucks that I'm just not able to do everything I used to do to take care of my own house. Don't get me wrong, I'm so grateful for Eric stepping up and doing more, and for various friends and family who have emptied the dishwasher or folded clothes while they were here. And the meals...that's been a huge help too.

I know this isn't going to be forever. It seems like it though, knowing I have what, 17 more treatments? At least? One day at a time.

Thursday, October 8, 2009

Ambushed again!

Yes, that's how it works at the cancer center. This time is was the Fry Doctor, and it wasn't a total ambush. I kind of figured he'd pop up either today or tomorrow because I've had a week of treatments and I'm supposed to see him once a week. Anyway, today was the day!

So I talked to his nurse, who asked questions like, "Do you feel any pain?" Um. Not really? She said she had to ask that question every time she sees me. She also has to assess whether or not I'm at risk for falling, because if I am, they're supposed to walk me in and out of the clinic. I said I didn't think I was quite that tired yet. She laughed nervously like she didn't know how to take someone being all jokey in the doctor's office. Listen, nurse, if I don't laugh, I risk crying and that gets annoying after a while.

The Fry Doctor showed me the CT scan of where the radiation is going. That was interesting. Then he asked about side effects and said I should have a stash of Immodium for the diarrhea. Oh, and I should avoid eating beans and raw fruits (except bananas). But canned fruit is okay (you know, with all the sugary syrup).

It's obvious I'm going to have to blaze my own path with this whole cancer thing. They're not ready for someone young who is concerned about things like sexual side effects. They're not ready for someone who is vegan. And you know what? That's okay. I'm going to be flexible and I'm going to do things that work for me. Don't get me wrong, I like my doctors and nurses. They've all been very caring, compassionate people. It's just frustrating that they're expecting me to be textbook. Maybe I won't be. There's no way to know that right now, and it gets me agitated when people assume things about me and my body, especially when I've known my body a lot longer than they have.

I ate an apple on the way home today. A raw one. I know, I'm such a rebel. And guess what I'm having for lunch? BEANS. Bwahahahahahahaha!

Wednesday, October 7, 2009

No, I didn't forget...

even though I wanted to.

I received a message from a very worried nurse at the cancer center because it was 4:15pm and I hadn't gone back for my chemo bag yet. They joked that they thought I forgot.

Actually, aside from being freaking exhausted this afternoon, I did feel normal. Sort of. I think that's why I cried on the way home tonight. There's nothing that says, "Hey, you have cancer" like lugging around a chemo bag. One week down though, right?

I made the mistake of looking at the needle that goes into my port. Holy hell, that's a big needle! I mean, it probably isn't, really, but yikes. I was a little nervous that it would hurt like a banshee putting that needle back in, but it didn't. The needle poke place is a little red though, so the nurse shoved a round pad with some antibiotic ointment under the yellow needle placer thing.

I'm a little irritated too because when the nurse took the dressing off this morning, there was all kinds of gunky stuff where the edges were. He said something about cleaning that off, but then never revisited it, and I didn't remember to ask. When I asked about cleaning it off tonight, the nurse (a different one) was all, "Oh, well, that probably should have been done this morning because the new dressing won't stick if we use cleaner now." Blah blah blah.


Another 45 minutes? Really?

People at the cancer center like to pounce on you. Today it was the nutritionist, who wanted to talk just really quick about side effects and eating well during treatments. I politely informed her right away that I'm vegan, and she started asking if I eat any dairy (no), or if I eat fish (NO). Then she asked if I like beans, and wanted to make sure I'm getting enough protein. I could go off about this, but I'll spare you. Anyway, I assured her that I've been concious of making food choices deliberately to include lots of fiber and that I do eat soy a few times a week, beans more often. I kind of wanted to tell her that there's protein in veggies, but you know, I didn't want to sit there all day. She did, however, give me a benefiber sample and coupons for FiberOne cereal. My weight seems to have stabalized (although I'm pretty sure the chemo bag weighs like two pounds), but she seemed concerned about my initial weight loss. I'm not. I agree that crash dieting isn't probably wise when one has cancer, but it's not like I'm eating crap or doing it on purpose.

So after that, which maybe seems long but wasn't, I checked in to get my chemo bag changed. Now, I like the chemo people. They're all very nice. But they're not very efficient, not like my Radiation Girls. I wish they'd give me an actual appointment for the chemo bag changing, but I'm not sure it would help. The lines have to be cleaned out and then a new bag put in, they draw blood (through the port!), put in a new needle, blah blah blah. The nurse told me it would be another 45 minutes and asked if I had some shopping to do in the area. Um, no. I don't actually. My whole goal is to get in and out of the whole cancer center so I can get back to my kids. It's not like I can be gone for two hours, man. So I asked if I could come back later today, and was told that was fine.

It's not perfect, of course. More gas, more of my time. It's too bad they don't have some kind of a rotating bag system or something so it doesn't take a thousand hours.

On the bright side though, I'm bag free for the next handful of hours. And I got a spiffy colorful bandaid over the poke hole in my port. And maybe next time I'll suggest coming in early, having them do the blood work or whatever, and then stopping back after radiation to get hooked up.

Tuesday, October 6, 2009

Oh noes!

I get a little nauseous but only in the morning. At first I thought maybe it was due to an empty stomach. That's a pretty easy fix, instead of waiting until I'm hungry to eat (which is what usually happens), I've been eating toast right away. Toast with peanut butter, you know, for the protein. I also have a cup of coffee every morning because I like it. Okay, okay, I'm hopelessly addicted. I know I'm not alone, you coffee drinking readers you.

Here's where the Oh Noes come in. I think it might be the coffee. Panic inducing, isn't it?? Well, not really. An adverse reaction to caffeine is, unfortunately, one of the more common side effects of chemo and radiation. So this wasn't unexpected. I've been cutting down on the coffee, and I'm at about half of one of my mugs, so maybe 8 oz? If I can find my freaking teapot, I think a switch to tea wouldn't be such a horrible tragedy. It's probably cheaper than coffee. Drinking tea would cut my sugar consumption by a lot (I like my coffee sweet, all right! Quit raggin' on me, man).

But coffee is tasty, and I might hang on for a few more days and see if it's really the coffee. It would be a shame to quit too hastily, right? On the bright side, I do enjoy tea. Green tea is supposed to be healthy.

Sigh. Maybe I'll go look for my teapot.

Monday, October 5, 2009

You know what I miss?

The pelicans. Yeah, how silly is that?? Apparently pelicans are a relatively new thing in the Fox Valley. I remember seeing them last year but before that, I don't think there were any living in the area. You can't miss them though, they're huge white and black birds with their pelican faces moving back and forth. If you want to see them up close, you can go to Neenah. Over here in Appleton, you're likely to see a group of pelicans way up in the sky, higher than all the other birds. They hover and glide in big circles. It's amazing. I wondered if they flew so high to get out of the heat because you'd see them often on really hot days, lazily flying.

I don't really have a reason for liking them. A bird person I am not. In fact, birds kind of freak me out. Those pelicans though, they make me want to sit around and just watch as long as they'll fly.

Sunday, October 4, 2009

Ups and downs

I feel better today. I think vegan chocolates definitely help, so big huge thanks to my friend Lindsey who admitted to being the mysterious vegan chocolates giver. :)

I'd be lying if I said I wasn't at all anxious about the upcoming week. Thinking about how I reacted to three days of radiation, and knowing that I'm getting five days in a row this week...let's just say I'm not very excited about it. I've been told that side effects may begin to rear their ugly heads after about a week of treatments. Side effects are scary. There's a whole long list of things that "might" happen, and of course there's no way to tell which ones I get. Maybe none. Maybe tons.

At any rate, we have many friends who offered to help with the kids next week. I'm looking forward to seeing some ladies I haven't been able to hang out with as much. Reese and Eli are excited about playing with their friends too. Hopefully it will be a quiet week, and then my parents are coming for the weekend!

This is all doable. I know that, deep down. It's all about finding my guts and getting my tough on. And maybe applying for that passport, you know, just in case...

Saturday, October 3, 2009

Eli still asks at least once a day if he can have Un. During the day he's easily distracted, but at bedtime? Forget about it. And it's awful. So as he was falling asleep tonight I was crying quietly and thinking how unfair this is to him, to me, to us as a family.

Sometimes I think about running away. Aside from this not really being a good idea logically, all the places I would want to go are pretty far, so there's a little problem called a passport. Running away wouldn't change things, in fact it would probably make things worse. I know this. But I still consider it.

What, you think there's some kind of life lesson in all this? I don't think I need any life lesson this badly. Or maybe I'm just too sad and mad right now to get anything out of the teaching.

When I was laying next to my baby, feeling sorry for myself, there was a little tiny voice that told me to suck it up. There's a lot of shit ahead, and I can't fall apart now. So I won't. I mean, I'll cry sometimes, and I'll be angry sometimes. But I'm not a quitter.


I got a bunch of mail yesterday. Well, I've been getting mail everyday in the form of postcards and sweet cards from my awesome MDtG friends. Thank you again, ladies!!

My copy of Food Arts magazine arrived. I get that one for free because I lied and said I was a restaurant owner. Shhhhhh. It's all the restaurant buzz and new techniques in the food industry.

I also found a mysterious box from terra source gourmet chocolates. No card, no note, just delicious vegan truffles. Om nom nom nom. So good. Anyone want to take credit so I can thank you properly? I don't think I've tried chocolate from terra source, but it's a Madison based company, so that's really cool.

My children were quite upset to find me laying on the couch without the chemo bag attached to my body. It was funny.

Speaking of chemo bags, I managed to sleep last night without all the tubes getting tangled in Eli's hands and feet. I do this by hanging the bag on our decorative headboard, letting all the tubing out, and throwing it over my neck. Don't worry, it's much too thin to strangle me. Hah. And I'd rather not wake up with the tubing wrapped around Eli's foot (while he's kicking in his sleep) like we did the night before.

Sleeping? I'm tired. Chemo and radiation make me tired. Weary tired. It's definitely a drag. And I don't always feel like sleeping. Sitting on the couch is okay.

I'm going to the farmer's market today. Veggies! Mmmmmm.

Friday, October 2, 2009

You want me to eat what?

Broccoli. Garlic. Bok choy. Onions. Cabbage. Soy. Tumeric. Raspberries. Blueberries.

Want to know what these foods have in common? They're sited as cancer fighting foods in multiple books that I've perused since my diagnosis. And you know what? This pisses me off.

Why would a list of foods piss me off? THOSE ARE FOODS I EAT. All the time. Broccoli is on the table around here 3-4 times a week, if not more in the winter. Onions and garlic? I can't cook anything without onions and garlic. Lots of garlic. Raspberries and blueberries are a winter staple as well because we can get them frozen. Cabbage? Soy? Tumeric? Yep, those frequent my plate as well. Other foods like squashes I eat all the time too.

I guess it once again leaves me baffled as to WHY. Unfortunately, I don't think the why is something anyone can tell us. My surgeon attributed it to bad luck. That's damn bad luck, man. Some might say that they whys don't matter, I should deal with the here and now. Perhaps if I didn't have young children who are now at a huge risk for colorectal cancer, I wouldn't think about the whys so much. What can I tell them, besides to start getting colonoscopies in their 20s, to help them protect themselves?

That's just one of the many things I think about on a regular basis.