Monday, November 30, 2009

Can I just tell you how amazing it feels to take a shower without tubes, and get out and NOT have to immediately put aloe on my ass?? No fighting with the tube while I'm getting ready. The biggest thing I have to worry about is finding pants that fit. Kick ass!

If I didn't know there was a tumor in my rectum, I'd think there was nothing wrong with me. It hits me at odd times. All of a sudden I remember. I have cancer. I did radiation and chemo. There will be a major surgery soon. I'm going to have more shitty chemo. Usually I start thinking when I'm alone, like last night in the bath tub. Or when I wake up in the middle of the night. It's just so bizzare to think that this is my life right now. This is what I'm doing. I wonder when one gets used to this new life? When does it stop shocking you when you think, "Oh that's right, I have cancer."? It's a lot easier to ignore now that I'm not dragging myself to the cancer center every day.

I don't know. Maybe it's always shocking. Maybe you don't get used to it.

Lucky for me most of my day is spent being busy, doing such things as sewing and chasing kids away from the Christmas tree. It's easier not to think sometimes.

Saturday, November 28, 2009

Too much reading!

In an effort to get more prepared for what's coming ahead, I've been doing some reading. I found some information and personal stories about the chemo I'll be on after the surgery. It's good information, and I'm glad to know it's out there, but I need to stop reading it. I'm freaking myself out. I *just* got done feeling sick, not being able to eat, dealing with the exhaustion. Thinking about doing a repeat of that, and maybe being worse off? Not all that fun. And keeping in mind that I was able to tolerate the radiation and 5FU better than the doctors expected, well, let's just stay positive.

I feel like I need to cram as much stuff into the next bunch of weeks as I possibly can. Seeing friends, getting some sewing done (yes, I feel like sewing!! I bought a new pattern too. Yay!), going out to the groups we frequent, cooking...in the back of my mind I keep thinking that I better do it now because 16 weeks of chemo might very well kick me in the ass. With the already hurried pace of the holiday season, this might not end well. I know I need to slow down, and yet I have a mental to do list a mile long. Good thing chemo brain keeps causing me to forget what exactly is on that list!

It's going to be okay. My way of dealing with things is to make plans and get prepared. If I can balance that with getting zen about NOT knowing what might happen, I'll be golden. Perhaps I should re-take up yoga?

For today, a trip to the bookstore is in order, and definitely some sewing. And I think that makes for an excellent day.

Wednesday, November 25, 2009

I'm free!!

This morning I went in to get the chemo pump disconnected. That's right, no more chemo pump! (well, for at least a month) The nurse was so funny. She asked me if I was going to go out drinking tonight. I laughed and said I wasn't sure. Then she asked how long I'd been on the pump and I told her 8 weeks. She goes, "Oh my god, I don't know anyone who has had the pump for THAT long! You better have a drink tonight to celebrate!" Hilarious, coming from a nurse.

So no more showering with the pump or sleeping with the pump or catching the tubing on things (like the vacuum cleaner...).

I cried after I left the cancer center. It was a hard thing that I did, radiation and chemo. I'm relieved it's over, but apprehensive that this isn't the end. It's not even close to the end, really. Sometimes I didn't know if I could do it, and I've had people tell me they couldn't get through it, that they couldn't handle it. I admire people fighting cancer, because we know you just have to get through it, you just have to handle it. What's your other option? Dying? Fuck that. I'm not going away that easily. So you take the hard path.

Anyway, today is a happy day. Tomorrow is Thanksgiving, and I know I have a lot to be thankful for. I hope everyone has an awesome time with family and friends. I will be drinking the wine. All of it. Hahahahahahahahaha.

Tuesday, November 24, 2009

I feel like I've been on this journey with blinders on, peeking out when I feel ready to tackle the next issue. Fortunately, I have Eric, who long ago researched pretty much everything there is to know about rectal cancer, treatment, you name it. When I ask a question, he knows the answer, or if he doesn't, he knows exactly where to find it. Something as big and life changing as cancer, it's so overwhelming. I know it's a lot for Eric too, but I'm grateful that he's able to suck it up and get us where we need to go.

So I don't even remember why or how, but yesterday I started reading stories about people with colostomies. There was a thread on colonclub.com discussing why there is such a negative reaction to colostomies, and many people shared their own experiences. Some were bad, most were good after the adjustment. I read about people who are just as active as they were before their ostomy, people who travel and swim (hello, snorkeling!), and have jobs and live life. Some websites were suggested, ostomyland.com and uoaa.org, so I dipped my pinkie toe in the water of what will be a huge change for me, for our family. One of the posters on the thread I mentioned suggested that perhaps fear of the unknown is what makes people so negative about colostomies. I would agree with this. Reading stories and information makes me feel better about the path my life is taking.

Would it be awesome if by some miracle the surgeon went in and discovered that the tumor had shrunk enough to save my anal sphincter? After what I've read about life without a rectum...I don't know. That probably sounds crazy. For a lot of people maybe it would be a no-brainer. Of course, anything BUT a colostomy. Perhaps I feel differently because when my doctor called me, when I stood outside the Oshkosh Library, he said, "You have rectal cancer. It will involve surgery and a permanent colostomy." I've had a long time to get okay with those facts. My doctor didn't beat around the bush or give any false hope. I appreciate that, as crappy as it was to hear. Oh I have my moments, my "Holy shit, I have cancer!" or my "Holy shit, I'm going to have a colostomy!"

Anyway, knowledge is power. So I choose to start gathering some knowledge. The sites I mentioned are helpful, in case anyone is interested in learning some stuff too.

Monday, November 23, 2009

Moving right along

I spent some of my morning making phone calls. One call was to the fry doctor demanding premarin cream. Okay, you all know me, and I was very nice about it. His nurse was nice too, she repeated back to me what my concerns were and emailed the doctor (he's at another center today). The doctor called me back, we chatted for a few minutes about the issues, and he sent a prescription for premarin cream to my pharmacy. It was kind of bizarre, actually, because I swear the nurse was more cranky about this last week. Maybe she was just having an off day, or just wasn't prepared for me to get snippy with her. Who the heck knows. Anyway, my vagina and I are happy this didn't turn into some epic battle for estrogen cream.

I also called my surgeon. Originally, the fry doctor offered to get the appointment set up and contacted the surgeon's people. The surgeon's people said they would schedule something in 2-4 weeks (this was around Nov 11th). The nurse said she could call again, and I said I would go ahead and call. So I left a message and hopefully they'll get back to me today. It would be nice to pin down a surgery date so I can start freaking out properly. Hah.

And the best phone call of all was some awesomely good news from my mom. Yay for good news!!!

My to do list is calling. I never thought I would be thankful to be able to accomplish things on a to do list, but I sure am.

Sunday, November 22, 2009

My parents are visiting this weekend, and we had Vegan Thanksgiving last night! It felt so good to help cook a meal, and to enjoy a variety of foods, and it tasted pretty gosh darn awesome. So far the chickpea cutlets and chickpea gravy are not reacting the same way the bean burrito did. Thank goodness.

It was kind of emotional too. We started talking about the chemo I'll have after surgery. Just to fill everyone in, I'm looking at 8 cycles of folfox/folfuri, which means I'll go to the cancer center and sit in the chair to get infused. Then I'll take a chemo bag home with me for two days. I can disconnect it myself, and then I have a week off. I repeat this for 16 weeks.

At one point I told my mom I really don't want to go sit in the chair, and I started crying. I had been hoping I wouldn't have to go hang around the chemo area of the cancer center, but now it looks like I won't be able to escape that. Isn't it funny that I have more anxiety about going to sit in a chair than I did about getting my ass fried every day for 28 days? I have more anxiety about sitting in the chair than I do about the permenant ostomy I'm going to have. What is wrong with me? My mom asked what bothered me about the chemo area. I blurted out that everyone looks really sick, and she said, "Well they are really sick."

But I don't feel really sick like that. I don't think I look really sick. I don't see myself in the people sitting in those chairs. Maybe if I could identify with them it wouldn't be as bad. I joked about hitting up my doctor for some anti-anxiety meds, except I don't think I'll do that. There are enough drugs with enough side effects running through my veins. I probably don't need more.

So that's my confession for the day. I'm irrationally scared of the chemo chairs. I guess the good news is that I have 6-8 weeks to get all right with things.

Thursday, November 19, 2009

Hey, want some good news??

Did I ever talk about Lynch Syndrome here? I can't remember. Anyhoo, because I'm so young for this type of cancer, it was suggested that we do some genetic testing to rule out Lynch Syndrome, which can cause colorectal cancer, uterine cancer, ovarian cancer...it's basically a big ball of cancer. Being positive for Lynch Syndrome would put me at a higher likelihood for those cancers. Eric and I sat down with a genetics counselor about two weeks ago to chat about my medical history, hoping to get some answers as to why I turned up with rectal cancer. The counselor was very helpful, and said the best course of action was to have the biopsy that the surgeon did tested at Mayo.

So we went ahead and did that. The studies came back normal, which, drumroll please....means I most likely do NOT have Lynch Syndrome. Yayyyyyyy!!!!

It was implied that if I did have Lynch Syndrome that I should have my ovaries and uterus removed, and I have to say, I was against that. I like my organs where they are, thanks. Now I don't have to stress about that! Of course I'm still going to be diligent with pelvic exams and such. But believe me, this is a load off my mind.

Yay for good news!!!!!

Okay party people...vagina talk ahead

If you'd rather not read about vaginas, you might want to skip this one. No one is judging you, everyone has their own level of comfort with female genitals. With that warning, here we go.

I'm going to talk in layman's terms because I'm not a doctor, and I don't pretend to know everything. I don't. If you're interested in a more medical explanation, feel free to google. :) Much of my own information comes from a very kind woman on the colon club message board. I'm really thankful that she took the time to explain things and make suggestions to me.

A couple things are going on during radiation. One, radiation fries your ovaries, which puts most women into a medically induced menopause. Estrogen production decreases quickly, vaginal tissue dries out, doesn't stretch, and is itchy and uncomfortable. Two, radiation not only burns skin on the outside, but also burns inside tissue, like your intestines and vaginal tissue. Scar tissue forms, and if not dealt with, can close up the vagina. Vaginal stenosis (narrowing) can cause sexual problems, but also makes it difficult to have a vaginal exam.

From what I've read, mostly personal stories of other young women who have had colorectal cancers, if these issues are not addressed, there can be serious problems. This whole issue is something that I wish I would have read about sooner. Or better yet, my doctor should have discussed this with me and helped me take steps to minimize the issues altogether. Having sex three times a week and/or using vaginal dialators during treatment helps to minimize the effects of radiation on the vagina. Using an estrogen cream like premarin can help the tissues keep their elasticity.

So you're probably wondering what I *was* told about this. First of all, I had to bring the fact that I had read about sexual side effects and wanted to know more about those. I believe I've mentioned this before, the nurse was flustered, the doctor wasn't all that concerned. It was suggested that sex could cause infections and we might want to avoid that. For the record, I disregarded the whole infection thing. ;) So at this moment, I'm not as bad off as a woman who didn't have sex at all or use dialators during treatment, thank goodness. When I asked about vaginal dilators, I was told that after treatment I might want to use them, but wasn't told when or how or anything.

After learning more within the last week or so about the effects of radiation on the vagina, I called and left a message for my doctor asking about premarin cream. I talked to his nurse this morning, and it was not a very productive conversation. For some crazy reason, the nurse decided that my main concern was vaginal/labial itching. She suggested Astrolube (and even spelled it out for me, how thoughtful...can I get an eyeroll here?). I asked why the doctor wouldn't prescribe premarin, stating that I was concerned about vaginal adhesions. She said the doctor liked to try over the counter topical creams first to see if that would help. I said I was concerned about the elasticity of my vagina and read that premarin could really help with that. She said that I'm still healing from the radiation and shouldn't worry about that now. At this point I got snippy and said I'd also read that I should have been using vaginal dialators during treatment to minimize the effects on vaginal tissue. She said that wasn't recommended because of risk of infection. Basically she just kept telling me the same thing (infection, use the astrolube) so finally I asked how long I should try the astrolube (in other words, how long until I can call you up and harass you again?). She said five days.

I waffled a little bit about how to proceed. In the end, I decided that I'm going to try the lube for five days. I can still use the dilators, so at least I'm not just doing nothing. In five days, I suspect I might need to just make an appointment with the doctor, bring Eric with me so he can talk when I get flustered and cry, and ask why the doctor doesn't want to prescribe premarin. Believe me, if he has a convincing medical argument, I'd like to hear it. I'm not all "I read it on the internet, so it must be true" here, but it's hard to ignore story after story of women who are unable to have sex because their radiation oncologists didn't tell them to do a few simple things during treatment. Holy hell, I don't want that to be me. I'm 32 years old for cripes' sakes. But this "risk of infection" argument is not going to cut it with me. If there's some other reason, then let's talk about it, let's have a discussion about pros and cons of using estrogen cream.

I don't know why this issue wasn't discussed before treatment started. Please don't get me wrong, I really like my doctor, and I think his nurse is very nice. At the same time, the sexual side effects are important to me, and I thought I made that clear from the first appointment. I can take some of the blame for not pushing the issue, but it's hard to do so if you don't know what you should be asking for. If you don't know what to ask.

At any rate, please don't worry about my vag too much. If for some crazy reason the fry doctor won't prescribe premarin, I'll move on to my family doctor or I'll find a gynocologist. I'm going to be okay because I have the knowledge and can move on from here. However, the practice of totally disregarding sexual side effects and how to minimize them is ridiculous and maddening. Please, please pass this information on to any women you know who are dealing with colorectal cancers. If you don't want to talk vaginas, just point them in the direction of my blog or the messageboards at www.colonclub.com so they can get the information they need.

Thanks for talking about vaginas with me. :)

Wednesday, November 18, 2009

Livin' on the Edge

If you follow me on facebook, you already know I ate half a bean burrito last night for dinner. When I refer to this as "living on the edge," it's for a couple of reasons. Beans have an incredible effect on one's bowels. I haven't eaten beans in, wow, probably a month. You put those two facts together and what do you get? Perhaps you don't want to know.

Man, that burrito (it was an Annie's brand bean burrito, if you were curious) was worth it. It was soooooo good. For someone like me who pretty much lived on beans and vegetables and fresh fruit the abrupt change to a basically white diet was hard. I'm tired of rice and applesauce. I'm even kind of tired of toast, and I freaking love toast. Over the past week I've been adding a little more cooked vegetables, but obviously it was too soon for the beans.

I did read though that the effects of the radiation continue for a couple of weeks past the end date, including bowel sensitivity. So yes, I did know that eating the bean burrito was a risky endeavor. No regrets here!

Tuesday, November 17, 2009

I feel almost like regular people today. I think I get tired out faster than regular people though, because I just cleaned the downstairs potty and threw in a load of wash, and now I am tired enough that sitting down feels nice. Making breakfast and getting the kids started doing something besides watching tv wasn't a huge undertaking. It feels weird to NOT be laying on the couch or rushing to a radiation appointment. I'm considering making a to do list. I keep thinking of things I'd like to get done, but then I forget them. Chemo brain!! I like to do lists though, that's how I roll.

The only drag is that this morning I need to call the Fry Doctor and ask questions about my vagina. I've been doing a lot of reading and unfortunately there are things I could have been doing all along that would help preserve my sexuality. The good news is that there are still things I can do now that will help in the long run. As soon as I get the low down, I'll tell all, don't worry. The more I hang out on message boards and read other women's stories, the more I'm finding that the entire issue of sexual side effects is completely glossed over. That plain sucks. I know when I brought it up (and *I* had to ask), the nurse was completely flustered and the Fry Doctor, as much as I like him, wasn't all that helpful. In hindsight, I could have been more assertive and demanding of answers, but it's hard to do that when you don't even know what to ask. At any rate, hopefully I'll get some answers so I can start dealing with it.

I best go check on my children. This morning I let them play water in the kitchen sinks. If letting my kids play something messy isn't an indication that I'm feeling better, I don't know what is! ;)

Monday, November 16, 2009

Shut Ins No More!

This morning I took the kids to hang out at a kid-friendly cafe. There's a group on Mondays that talks recipes and craftiness, so I thought that would be nice for me.

I have to admit, I was a little anxious about going. Because of the timing of my radiation appointments, we've had to miss most of the groups we normally attend so I'm of course feeling out of the loop. I'm not a huge fan of big groups anyway (bet you didn't know that about me! I hide it well, haha), but seeing the same people weekly makes a group seem less big and scary. I wasn't sure if the kids would act right since they've been out of the group scene for so long. My bowels are unpredictable, so I was just a tiny bit worried about that.

Now that we're back at home, I'm so so glad that we went. The very thoughtful mamas pulled a cushy chair over for me, and the kids had a fantastic time playing. I got to drink tea and talk recipes and childbirth and all kinds of other stuff. It was awesome to reconnect with women that I haven't been able to see and find out what they're up to. The kids didn't hassle me about more snacks or fight with other kids.

I hope you're all assuming that if I went out today that means I'm feeling better. You would be right! I can hardly believe the difference from this time last week. Being out and about did make me tired, but heck, that's what rest time is for. It's still uncomfortable to pee and poop, but things are still healing down yonder, and even that stuff is improving. My master plan is to take a little bath tonight because that seems to help quite a bit.

The hard thing for me though is knowing my limits and slowing down before I hit the wall. I get anxious to have things back to normal. I think about how awesome it will be someday to have Eric come home and have nothing to do because I got stuff done already. I'm trying to be patient, and remember that it might be a little while still before we can call our lives Normal again. Or maybe we should consider this a New Normal and roll with it? We shall see.

Sunday, November 15, 2009

Wait until you hear all the exciting stuff that has happened since I posted last!


Just kidding. It's the same old, same old around here. You know, laying on the couch, applying aloe and burn cream, falling asleep. As long as I drink lots of water and therefore pee all the time, there's little to no pain there. My ass doesn't hurt so much as itch and feel prickly. It's annoying to sit in one place too long (like the hard chairs in the exam rooms at the cancer center, haha). I think the dead skin is done falling off (which is extra gross in the little bath, I might add).

I don't know. There's not much to say. I'm keepin' on keepin' on, as usual.

Friday, November 13, 2009

Yay for Friday!

On my one week Done With Radiation anniversary, I'm pleased to report that my ass hurts less. I've been longing to share more good news here, so that's my good news for the day. Don't get too excited because I'm still not moving very fast, but it's so much less hurty.

I'm scared of pooping though. That really burns, man. BURNS. And before you suggest diaper rash cream, because I know someone will, the zinc in diaper rash cream is NOT good for radiation burns. It will make them worse. I know this because I read it on the internets. Besides, I don't know that it's helpful to wrack our brains for something to put on this. The burn cream and the aloe are working great. I suspect I just need more time. So I suppose if you have some sort of time machine that might be useful. Anyway, back to the poop. The sitz bath does help with that pain.

Really, I'm going to be okay. In a lot of ways life sucks, but in so many more it's all good. Kids in pleasant moods, friends stopping over for tea, delicious Annie's scrambled tofu meal, huge box of vegan chocolate...see? Even if a time machine was possible, would I want to miss all these wonderful little moments? I don't know that I appreciated these little things as much before cancer. I took many things for granted, that they would just always be there. It's easy to do that when we get busy, when it seems more important to clean the house or run the errands than to play with our kids or hug our spouse. Cause no one is going anywhere, right? Not my family, because bad things don't happen to my family. But I'm proof that bad things DO happen. So, you know, don't live in fear of those bad things. But remember to appreciate today, right now.

Aren't you glad that my mind is off the pain in my ass so I can concentrate on philosophizing? Ahahahahahahahahaha. No worries, I'm sure I'll be back to writing about disgusting and weird things soon.

Thursday, November 12, 2009

Yesterday was such a craptastic day. I was short-tempered, the epitome of Bitch Mother (which you would know about if you read the East Village Inky...come over to my house and I'll let you read a copy), even though I tried not to be, and I'm blaming that soley on my ass. Raw skin, people, raw skin. It is not pretty. The best I can do is burn cream, aloe, and the sitz bath. Hey, that sitz bath, that's good stuff. I'm glad I just did it last night because it did not hurt like I worried about, and I'm sure it's good for my skin.

I appreciated the google advice. :) A friend of mine from one of my messageboards actually found me a colon cancer messageboard (www.colonclub.com) where I was able to find some helpful information.

Today I go to the cancer center for what I hope is an uneventful chemo bag change so I can get on to bigger and better things. Mainly potato oles from Taco John's.

Wednesday, November 11, 2009

Sigh

Google is in epic fail mode for me today. Is it so much to ask to find some information about the normal course of healing after radiation for rectal cancer? I understand the whole "talk to your doctor" thing, and I did that. I was told I should start feeling better in about two weeks. Well you know what? That's not good enough for me. I want to know how healing is going to feel. I want to know what my skin might do. Does no one talk about this? Perhaps I'm googling the wrong phrases? That's frustrating too because normally I'm a pretty good googler, if I do say so myself.

So once again it's up to me to blab about it. Fine. I'll tell you though, blazing my own damn path gets annoying sometimes, especially when I'd like some answers and to know I'm not alone on this stupid cancer island. I think part of my purpose for this blog is community service, so if some other young adult turns up with rectal cancer, they can at least know they're not alone.

It's been five days since I was last fried (isn't that awesome!! one ray of sunshine, most definitely!). Skin is still coming off, how's that for disgusting? It seems like maybe not as much though. Some of the parts that were affected but were on the edge, if that makes sense, are feeling itchy. Other parts closer to the epicenter of the burn are prickly and uncomfortable. I'm using the burn cream a few times a day, and freak tons of aloe in between that. There were plans for one of those crazy sitz baths last night, but I talked myself out of it. I was cold and tired. Tonight I won't listen to my whiny self because I think a little bath would help. It hurts to pee, but I suspect urine running over burned skin will do that.

I have almost no idea if this is how things normally go. The Fry Doctor and his nurse have pretty much told me that everything I've complained to them about is normal and give vague statements about how things might go. Yes, I know everyone is different. Blah blah blah. You know, I'm just so impatient for this all to be over. It would be nice if I could take my kids to the park or the library, or if I even just had more patience with them.

As far as flu watch, I had a fever last night again (100.something), but other than a small sort of cough, nothing.

Well, I'm off to find things to do that involve sitting very still in one place. Perhaps one day I'll make a list because I'm becoming an expert.

Tuesday, November 10, 2009

I vacuumed my own living room today. I know, who cares, right? But it's been weeks since I vacuumed anything. It made me really tired, but still, I feel very accomplished. One of the things I've learned from all this cancer nonsense is that I maybe should have been working with the kids more in the ways of picking up. I'll admit, I fell into the trap of it's easier and faster for me to just do it all. Because those of you with children know, it is totally easier. Now that bending over makes me want to grit my teeth, those closer to the ground are being asked to do more pitching in around here. I think that's okay. It's mostly their mess, man.

Anyway, I'm glad to be feeling good enough to do lame things like vacuum. Or empty the dishwasher. Seriously, last week, I didn't have the energy to empty the dishwasher. Talk about taking things for granted. I used to run around this place and have the entire main floor level picked up and clean in maybe 45 minutes. I could multitask and start dinner while loading the dishwasher or cleaning something in the kitchen. I could clean the bathroom really quick before the kids even knew I was gone. I miss my amazing mom super powers.

The plan for today is to relax and putter around. It looks like nice weather outside, so I think kicking the kids outside will be in order. My desk is a disaster area, and a lot of it is paper that can be recycled. Who knows? I might even make dinner! A sweet potato sounds good.

Just in case you were wondering about the state of my ass...it still bothers. Things are prickly and ouchy. Sometimes it's worse, sometimes it's better. I'm glad constantly that I don't have radiation this week.

Here's something funny. The radiation nurse suggested a couple of times that I try a sitz bath. I smiled and nodded. But I sort of didn't know what that was, or had a vague idea. So last night Eric was on his laptop and I asked him, because I can ask him any silly question known to man and he doesn't mock me. Much. Now I know what a sitz bath is. I'd tell you, but I'm sure your google works. Bwahahahahahaha!

All right. Have a great Tuesday!!

Monday, November 9, 2009

And the news is...

We don't know! A big bunch of we don't know! How exciting!

The stomach cramps baffled the nurse. She thinks it could be low potassium so I'll be taking pills for that. Or it could be stomach acid, so I'm going to try some Prilosec for that. Whatever it is, the nurse really wanted to find out because I've lost weight. She was shocked that I'm holding up my pants with the chemo bag belt. I think it's great that the chemo bag belt has another function other than annoying me.

I didn't have a fever when the nurse took my temp. Of course not. She said my lungs sounded really good. So then we went back and forth about whether or not to go ahead with tamiflu. Based on some of the other sickies in my house, she thought I should get swabbed for flu and then start on tamiflu. But she waffled, so when the chemo doctor walked past the exam room, she called him in to get his opinion. The doc said that yes, I could get swabbed, and that there's a 50% chance it will be positive (and that could be a false positive), and that swab will have to go to the state, and it takes THEM five days to test, so by then I'll either have a flu or I won't. If I do, tamiflu won't be effective. Then there was a discussion about me having to go to the hospital to get swabbed (I was NOT thrilled with the possibility of going to the hospital...that is the place to be if you're SICK). In the end, the doc suggested we skip the swab and since other people in my household have flulike symptoms, I could just start on tamiflu.

So that's the deal. And if I've made plans with any of you for the next few days, I'll be contacting you to see if you'd like to cancel, although the children seem fine. I feel pretty okay too, aside from my radiated ass.

I don't need this. Or that. And surely not that!

Did you ever see something you wish you hadn't seen? That's the way I felt this morning when I got a glimpse of my lady parts. Definitely cringe-worthy. If I was a mean sort of person, I'd totally take pictures and post them. Lucky for you that I'm so nice. And that I feel enough people have seen my lady parts. I wish I could say things felt a ton better, but eh, they don't. It's prickly and tingly and ouchy and itchy. We should have purchased stock in an aloe company.

Thing number two that I could live without: stomach cramps. Every damn time I eat or drink something, it feels like someone is grabbing my stomach with poky fingernailed hands and squeezing. I'm not a doctor, but I'm pretty sure this isn't the radiation. I'm no longer nauseous, so I'm going to blame that on the meds I was taking for radiation side effects. I finished the cipro (okay, not really. I had one more left. But that stuff made me feel awful. And it was just one! Please don't judge me). I stopped taking the orange pee pills because frankly they were doing nothing, and those made me nauseous too.

And the best thing ever...I spiked a fever last night! Well, yay! Only not really. 101.5, then down to 99 this morning. I can feel the beginnings of a cough. Don't worry, I'm seeing the nurse this morning so she can check me out. And I can complain about the stomach cramps.

I'm sure there will be an update at some point later!

Sunday, November 8, 2009

I wish I could say I feel hella better today, but sadly, I do not. I'm still tired, my ass still hurts, same old same old. Blah.

Saturday, November 7, 2009

I don't feel much better today, still very tired and very sore. The last couple of weekends I seem to recall Sunday being a better day, so here's hoping that's true of tomorrow. Sleeping last night was a drag...I was in the bathroom for a while around 1:30am, then Reese was awake, then Eli came to bed and couldn't calm down. My butt hurt so much I didn't want to move or have anyone touch me, kind of a tough order with a husband and a cosleeping child. Tonight is another night though!

Eric bought me a new blender today. I used our old one yesterday, but it was smoking and I kind of thought that it might not be wise to continue using it. I tried to talk Eric into a vitamix, and if you want to know why we didn't go with that, just go look it up on your internets. Hah. Instead I got a very nice looking Oster, very fancy black and silver. If I feel hungry later, I might make myself a smoothee.

Guess what else I got, suckers? An Easy Bake Oven!!! BIL/SIL stopped by last night with an End of Radiation gift, and I was so surprised! I've always wanted one of those. And yes, I know it's just cooking with a light bulb. Reese and Eli have been freaking out about it all day, and I wish I felt better. Yeah, too tired and hurty to play Easy Bake oven with the kids. How crummy is that? Maybe tomorrow. Anyway, thank you so much, BIL/SIL!! Awesome gift!

I feel like I should be getting people gifts, not receiving them. There's no way I could have done this without all the people who helped with Reese and Eli. It was a lot easier leaving them knowing that they were being cared for by such great people. I suspect my family would have eaten a lot more pizza and other assorted crap without the meals in our freezer. I don't know if I would have been in such good spirits without the postcards, cards, little gifts, messages on FB, hugs and words of encouragement. This really has been a journey for all of us, hasn't it? I couldn't ask for better fellow travelers.

It's not over though, but the radiation was a huge mountain on this cancer trip. I'm really having to stare at surgery now, and it's scary. Knowing that I got through the colonoscopy/port placement okay helps me not be so freaked out, but man. I'm freaked out. There is going to be cutting. And removing of parts. And I'm going to have a hole in my belly like that crazy cow I saw at the veterinary college. I think I can do it, especially if you're all plodding along with me.

Friday, November 6, 2009

I. AM. DONE.

Did you catch that? I'm done with radiation! I made it through 28 treatments. The Radiation Girls gave me a diploma and a survey. There were lots of times I didn't think I was going to make it, or that I wanted to quit.

As I was climbing off the table, I asked what they were going to do with the molded board. Apparently the boards just get thrown away! So I brought mine home to show the kids.

And now I think I will lay down.

Thursday, November 5, 2009

Warning! Grossness ahead!

Whooo, I'm having blogger issues today.

And plenty of ass issues too! Of course, lots of things would come up on the second to last day of radiation. The Fry Doctor was all, "Well, this is how we know it's working!" Oh thanks, Fry Doctor.

Anyway, I took a look at my asshole this morning and yikes. I swear it wasn't that red and irritated two days ago. And guess who else decided to join the party? I have a little hemorrhoid (for real this time, hahaha). Of course my diva asshole would want to experience all the typical asshole ailments before being removed forever. So I had to ask the Fry Doctor to look at it. He and the nurse took one tiny look and suddenly all the symptoms I've been having are explained. Well yay!? Explained by...wait for it...radiation treatments! Who would have guessed? More specifically, the skin in the radiated area is kind of coming off and trying to repair itself and it's pretty much a big hot mess. There was a technical doctor term, but it was long and I don't remember it anymore. It doens't matter because whatever you want to call it, it HURTS.

I got some burn cream. It's niiiiiice. And the good news is that the Fry Doctor expects that I'll feel much better in about two weeks.

After all that, I had to go over and deal with chemo. A nurse did the line draw and removed the monster needle from my port. She spirited my pump bag away, and I got to hang around the waiting room. While I was there, I stole some cancer cookies for the kids, and helped myself to some water. Another nurse came to get me. I was informed that the chemo side has a new computer system so things were moving a little slowly. The second nurse, after taking some vitals (don't worry, I'm still alive), left me in an exam room. For a long time. Good thing I had my Ipod.

The chemo nurse showed up all flustered, blamed the computer system, and we got down to business. My white blood count is good, 5.6 so yay for that. My liver is functioning well. I complained about the nausea, and the nurse fretted about my diarrhea (which I didn't really think was that bad until today because today it kind of is that bad). I got some fancy new prescriptions for both issues.

The thing I didn't like was before they would rehook my chemo pump, the nurse wanted me to have some of the anti-nausea meds through IV. Yeah, so I had to go sit in the chemo lounge and it was weird and uncomfortable. People are really nice back there, the volunteers came around pushing their cookies and coffee. But there's nothing that shoves the realization that you have cancer in your face like being around a bunch of people who also have cancer. Maybe I'm still having trouble wrapping my mind around having cancer. Two months ago, I didn't. I mean, I DID, but I didn't know it.

The anti-nausea IV made me freaking hungry, so as soon as I escaped from the cancer center, I drove to the nearest Taco John's for some potato oles. Don't get too jealous, they kind of gave me a stomach ache. That's typical of food lately.

The morning completely wiped me out. I came home and pretty much crashed on the couch. For about two hours.

Wednesday, November 4, 2009

Holy crap, Wednesday already??

Not that I'm complaining. I'm all for this week speeding by, thank you very much.

But today is Narrow the Field and Increase the Intensity Day. And I have no idea what that means exactly. Eric tried to explain it to me last night because he is the master of information, and I kind of get it. Unfortunately, I don't think I can explain it to anyone else, so maybe I don't get it? My main concern is: Will this hurt more? I guess I'll find out.

The worst thing right now is the whole stomach cramps and nausea after eating thing. The is probably really bad to say, but if I didn't have pills that need to be taken with food, it would be quite tempting not to eat at all. Don't get all freaked out, I most likely won't go that far. When you're not feeling hungry in the first place though it would not be hard. I'm pretty sure this is a chemo issue, so I'll yak at the nurse on Thursday.

Even though I'm thrilled to be almost done, it's going to be so weird next week. I'll have no place to go every morning. If I'm feeling good, the kids and I could *gasp* go somewhere! Going out in the public with all the sick people might not be a good idea so soon, and I'm sure I'll need more rest. Think of it, how nice it will be NOT to be tied to a schedule. My schedule tended towards the full side before all this craziness, but it was mostly optional stuff. If I wanted to blow off library storytime or a park playgroup, it was no big deal.

I miss our groups and friends and getting out of the house because we want to.

Tuesday, November 3, 2009

My pee is bright orange. Really. The Neighborhood Watch captains passed out a neon orange sheet with everyone's info, and my pee is the same color.

So there are amusing side effects to this whole cancer thing too.

But I am a dragging fool this morning, and noticing that the temperature gauge reads 27 degrees does not motivate me to go outside. Yikes. Hopefully this will be a quick morning and I can come home and park it on the couch. Or on Eli's bed while I supervise the cleaning of two extremely messy bedrooms. I think either one would work out just fine.

It's Tuesday. Three more after today.

Monday, November 2, 2009

I have doubts. I worry. I get stressed out and want to give up. Some days I have to really talk myself into getting in the car and going to radiation. It's not all the time, feelings like this come and go. Most of the time I try not to be all defeatest because I don't have a choice. I can't give up, for tons of reasons that I've talked about before. Giving up isn't an option, but damn it's tempting sometimes.

But then my mailbox gets flooded with mail or there are kind messages in my email inbox, or on facebook. Little things, like the almost daily postcards I get from some of my internet friends. I have saved every postcard, letter, any piece of mail I've gotten. Big things, like the fleece snuggie I opened up today. Offers from faraway friends I've never even met in person to come and stay here to help with the kids. Huge things like the mama who wants me to have her stash of breastmilk because it's supposed to help with chemo side effects, and this is a mother I know has struggled in her breastfeeding relationship with her baby. Our freezer is full of food, my children are well taken care of when I have to be away from them, and if we need anything there are countless people we can call.

I am so overwhelmed today by the kindness and awesomeness of the people in my life. I haven't been able to quit crying since I started opening my mail today, it's so amazing how generous and selfless people can be. Someday I will pay it forward to the best of my ability.

But now I need to get a grip. My children are insane, it's a bit past their rest time, and I could use some rest time myself.

Another Monday

As cranky as I was last week about having to do radiation for another whole week, the time has gone by really quickly. Two months ago, things like chemo and radiation weren't even on my radar. Those are things that happen to other people, right? Not me.

I know I complain a lot on the bad days, but on the good days it occurs to me that, compared to some of the people I see at the cancer center, my stuff isn't super awful. I mean, I wouldn't recommend you all go out and get rectal cancer or anything, but it's all been doable for me. And maybe it all comes down to who is more stubborn, me or teh cancer?

I have a lot of reasons to get better. Of course there are the obvious ones, my kick ass husband, my awesome babies, my family and friends. But aside from all that, there are so many things I want to do, so many things I want to see. When the kids are old enough, I want to take them to Mexico, go to Thailand and Cambodia, see the US. I have sewing and new recipes and groups that I'm a part of. I have a lot going on, yo.

So here's hoping this week goes quickly too, because with radiation finished, I'll be one step closer to being done with this whole mess. Happy Monday!