Thursday, December 31, 2009
Amidst the storm of worry and nerves and fear, there is a calm. I feel peaceful about my decisions for my treatment. I trust the surgeon and his skill. So while I may not really want to go through with surgery and more treatment, I know this is the best thing for my health. I think that helps.
Like I've been saying all along, I have so many reasons to be brave, to be strong.
So the plan is to hang out with friends today! And if we're going to get out the door anytime soon, I need to get a move on. Happy New Years Eve Day, everyone!!!
Wednesday, December 30, 2009
I looked at the clock a little bit ago and realized that at this time in one week, I'll be done. If everything goes well, I will be in recovery by now. Hopefully I'll have Eric holding my hand, and we'll know for absolutely sure that everything is okay.
Why doesn't that thought make me feel better? Why can't I be okay with this? Why does it still make me cry?
I can't even pinpoint what's upsetting to me. Anesthesia? Having a tube down my throat? Having someone cut into me, cut parts out of me? Colostomy? Being in pain again? Staying in the hospital so long? Everything maybe?
Tuesday, December 29, 2009
I tried to copy and paste some song lyrics here, but I don't know what's going on with blogger. Booooo blogger. Anyway, the song is "Long Day" by Matchbox 20. Does anyone still listen to Matchbox 20? Yourself or Someone Like You was one of my most played CDs back in the day (college). I was going through my Turtlepod while driving through the frozen midsection of Wisconsin and rediscovered my Matchbox 20 love. The lyrics are worth googling if you've nothing else to do, since I'm not going to type them all out for you. I will give you the chorus though.
"Reach down your hand in your pocket
Pull out some hope for me
It's been a long day, always ain't that right
And no Lord your hand won't stop it
Just keep me trembling
It's been a long day, always ain't that right"
Check out the album, it's good stuff. "Long Day" has been in and out of my head since it popped in there yesterday. Sometimes this feels like one big long bad day.
I'm nervous about surgery. I feel like I'm on a moving walkway, and the surgery date is up ahead, and all I want to do is turn around and walk away. But the walkway keeps going, days keep going by, and before I know it Wednesday, January 6th will be here. I go back and forth between worrying about some tiny aspect of surgery that randomly pops into my head and stressing out about all the things that need doing before Eric and I take that drive to the hospital.
Speaking of the hospital and random thoughts, I think hospital time would be prime time for some sort of movie watching marathon. We have lots to choose from around here. I could do a Harry Potter marathon. Would it be ironic to host a House marathon in a hospital room? I have a couple seasons of Bones. All three Jurassic Park movies (yes, I even own the last crappy one, I'm a sucker for dinosaurs). Perhaps we should take a poll to find out what the visitors will want to see, because I will be happily hopped up on whatever drugs the nurses will parcel out.
See? That's the kind of stuff I think about. It's not all gloom and doom. But I don't think it would hurt for you to reach down your hand in your pocket, and pull out some hope for me. You know, if you're so inclined. The positive thoughts and prayers are always appreciated.
Friday, December 25, 2009
So our travel plans got messed up a bit because of the weather, but no worries. It's hard to feel negative when your children are enjoying their gifts and having such a great time. It really was a nice Christmas so far. I'm thankful to be feeling good, I'm thankful I had this time to enjoy my family. When we first started this whole crazy mess, we thought I'd either be in the hospital over Christmas, or would have had surgery right before. I'm glad there's no rush, that it could wait until after the holidays.
All right, party people! Have a fantastic rest of the holiday!
Wednesday, December 23, 2009
Time is running out, man. Today is the 23rd. 14 days until surgery. Two weeks. It's the most bizzare thing that I won't have a rectum or an anus (and a little bit of colon) in two weeks. In two weeks I'll be crapping into a bag. Well, probably a bit longer because it might take a day or two for my guts to start working again. But still. What the heck?? If you had told me ten years ago that this would happen when I was 32, I would have been in disbelief. I'm in disbelief right now.
I'm not dwelling on it too much now though. I don't have time! We're trying to get ready for Christmas, hoping we can leave Christmas morning as planned but the weather looks dicey. I'm also trying to get some cleaning done around the house, my pre-surgery nesting.
Deep breaths, life is going to go on.
Monday, December 21, 2009
As the days of December rush by, I'm starting to feel more and more anxious. Sleeping has been okay. Eating...not so much. I'm nauseous and nothing looks good and blah. Don't worry, I'm taking care of myself and eating healthy foods, and doing things to help myself relax. You know, the usual, smoothies and yoga in the morning, lots of beans and veggies the rest of the day.
I debated mentioning this on my blog, but if someone else is reading this and experiencing what I am with rectal cancer, I want them to know that it's okay to feel anxious. It's okay to be inconsolable. I honestly don't think there's anything that can be said or done that will make me feel better. And I think that's an okay place to be, really. That's the here and now. I'm nervous and scared and worried. I know what's going to take place during the surgery, I'm aware of how things will most likely go afterwards. I read about ostomies and looked at pictures of stomas, I know a little bit about caring for them. We have a plan for the kids during my surgery and hospital stay, we've talked to them many times about everything. The house is clean, haha. All my ducks are in a row, but the anxiety is still there. So I can get upset about that and become more anxious, or I can just keep taking care of myself and enjoy Christmas with my family. There is room for all my feelings.
And rest assured there are MANY really great things happening around here! Reese's birthday party was a great success. I'm so excited about going home for Christmas. I cleaned out our homeschooling basket, added new games and activities, so that's all ready to go for the new year. Lots of things are going well.
Fortunately, there's little time to dwell too much on January 6th. Keeping busy does have advantages!
Saturday, December 19, 2009
My life will never be the same. How many times have I thought this? Not just about cancer either. I've been having "my life will never be the same" moments since, well, my whole life! Going to college, meeting Eric, moving to St. Paul, having babies, moving to Appleton...and those are just the really big things. How many hundreds, even thousands, of small events have changed my life and I didn't even realize it until much later (if at all)?
For example, our moving here was a wild ride. There were issues with the buyer for our old house in St. Paul which caused us to be delayed in getting our new house here. Our stuff was in a moving truck, we were staying with Eric's parents. One day, basically on a whim, I decided to pack up Reese and go to a La Leche League meeting. It was something I thought I would seek out after we got settled, I'd been going to LLL in St. Paul since before Reese was born. That day I met a group of amazing women, many of them still friends today.
It's natural to be a little afraid of the big changes (okay, I'll admit to being a LOT afraid). The big changes do have such an impact on our lives. Those sneaky little changes though, change is always happening. And it's okay. And life indeed goes on.
So I'm trying not to be too fearful of how my life will continue to change after surgery. The things that are truly important to me aren't going anywhere. And one of those things, my daughter, is going to start pestering me for breakfast any minute here. :)
Wednesday, December 16, 2009
Maybe it isn't so much chemo anymore as it is a feeling of distraction. When I need to remember something, I normally file it "in the back of my mind." Well right now, the back of my mind is pretty full of surgery and stomas and chemo and getting ready and...you get the idea.
It's just such a distractable, inattentive state of mind to be in. I don't really like it.
Tuesday, December 15, 2009
I will admit, I had a little bit of a freak out just now (in my mind). Looking around the house, there is so much that needs to be done. Decluttering, reorganizing toys, cleaning really good...and not just for Reese's birthday party coming up, but just so it's DONE. With a bunch of help from my kick ass husband, I was able to have a nice, neat house when I started radiation. I really think that made it easier when I couldn't keep up with things anymore. We didn't have to worry about big cleaning projects because they were done, and it took a few weeks for the kids to de-organize the toys. Haha.
I don't think I've ever felt such a need to simplify. Cancer (and I suppose any life changing event) is so complex and takes over everything, and to combat that, I start throwing junk away. I start deciding what we really need and what we can donate or give away. Perhaps I ought to turn that energy loose on my fabric?
I hate to say it, but I think I'll feel better when we get the Christmas stuff put away again. Tree, you are nice but damn, your needles are constantly on the floor. Little Christmas Decorations, you are also nice, but you add to the clutter and make me feel anxious. I don't want to be uptight about stuff like that. The kids love the tree and all the decorations.
Rationally, I realize that 22 days is a long time. And it's not as if we won't have help after my surgery. It's not as if Eric doesn't pick up the slack and much more. Maybe it's a control thing for me. Since I have little to no control over my body anymore, I'm grasping at things I *can* control, like my messy house.
Sigh. It's time to do some yoga. Serenity Now!!
Sunday, December 13, 2009
I think about things at odd times. I look at my belly and wonder how the surgeon will manuever around my "mommy tummy" and where exactly the stoma will go (I have a rough idea). When I'm doing yoga I think that after surgery it might be a little while before I can start again (restart?). In the back of my mind, I'm planning how I'm going to handle being sick again, how I'm going to juggle the kids and being tired. It still gets really overwhelming for me, I don't know if that's normal. Should I be moving beyond the freak out stage? Can I really avoid thinking about things until the 11th hour? Is that healthy?
Maybe it's okay. I'm aware of the surgery, I have information about it, I've done reading. I'm not completely in denial. Yet there are times when I still experience thoughts like a jolt. I have cancer.
I think dumb things too, like my master plan to take a bath and shave my legs on the morning before surgery. Because, dude, I don't want to go into surgery with hairy legs. That is so not sexy. And one of my other master plans (believe me, there are several master plans) to make a list of vegan food possibilities so Eric won't have to scramble. I might even buy some stuff, like good vegetable broth and vegan jello. And hard candies. I was pondering the other day if I think I want to take a chance with hospital toast and margarine, or if I should bring my own. That stuff is silly, isn't it? But I think about that. I think about what it will be like in the hospital, about what it will be like to come home, about how I might feel. I have little to no idea what the reality will be. The surgeon mentioned that some people choose to have an epidural block to treat the after surgery pain. Really? That bad, huh? It's going to have to be pretty fucking bad before I'll let anyone stick a needle in my back, man. It's bad enough that people have to stick a needle in my alien port. Blech.
So that's where my mind is, when I'm not distracted by such things as making calzones, which is what we're doing tonight. Speaking of eating, I'm having NO problem with that, and have gained like 5 lbs since chemo ended. Um, yay? I guess it means I'm no longer sick all the time. Now that I can pretty much eat anything, I'm moving back towards making good choices because I do want my body to be healthy.
Anyway, off to make calzones!
Thursday, December 10, 2009
And let the record show that I would NOT have been in need of the winter gear in the first place today if I didn't have an appointment with my oncologist. It was a lab draw, wait a thousand hours in the waiting room, see the doctor for a very short time, and get my port flushed out kind of morning.
So. The chemo doc asked the usual nosy questions about my bowels, my overall health, and my ass. My white count is a little low, but still in a normal range. We chatted more indepth about the chemo regimen I'll be on (Eric would have appreciated the doc's little talk about drug studies). There are basically two types of chemo given for my type of cancer, folfox and folfuri (I hope I spelled them right!). Each have side effects, most noteably the folfox tends to cause nerve damage/cold sensitivity and folfuri tends to cause diarrhea. Some doctors will have patients do as much folfox as they can handle, then switch to folfuri. My doctor says it makes more sense to have a regimen that a patient can be successful completing than to start with one and then switch later. He's hopeful that the nerve issues will be less or won't start as soon by alternating, and that the diarrhea won't get as bad. After our little talk, I got my port flushed and was on my way.
A couple weeks after surgery, I'll see the chemo doc for an assessment to decide when we can start chemo.
Another little gem I learned today...during surgery, instead of digging around in my arms for veins, they can use my port! I happen to think that rocks.
Then I picked up the kids, came home, and made a big pan of refried beans (from scratch, oh so good). Nom nom nom.
Other than all that excitement today, there's not a whole lot going on. My ass is healed, and aside from some occasional itching, it's like I was never radiated. I did start my yoga DVD again. I can pretty much eat whatever I want without huge bathroom issues.
Some of the time I think I'm feeling okay about the surgery, but when someone asks me about it, sometimes I get emotional. Please don't feel like you can't ask me about it if you know me in real life because I think the more I talk about it, the more my brain "gets" it. And I really don't mind talking about cancer or surgery or my eventual colostomy bag or chemo or any of it. People get so weird talking about their butts. I get it, I think I used to be that way too. I want people to be aware that rectal cancer exists, that it isn't just an old people disease, and that we all need to pay attention to our bodies, even the parts that aren't dinner table conversation.
Tuesday, December 8, 2009
Other than stuffing my face, I've been doing more processing, thinking, a little crying. Taking things one day at a time is a good thing for me right now. I did start back up with the yoga DVD, which helps me to feel more peaceful. Well, as peaceful as one can feel with two small children hopping around, falling over, and asking why I can't touch my toes.
And we're slowly making plans for surgery and beyond as far as caring for those nosy children. My mom will be staying with us for a while, and countless others have offered help. I feel very loved, and am thankful that there are so many people that I trust who can help with my babies.
Anyhoo, we're off for tea and to drop off the missing library book I finally found. And so the mundane will prevail, at least for today. :)
Saturday, December 5, 2009
Let's try to add a picture!
So that's the deal, aside from the manly chest. I better not wake up looking like that. While I have no idea how the cutting actually takes place, maybe that's better. Eric likened it to pitting an olive (we watched a show about how olives are made today), but I don't know about that. For the time being, I'm good without the details. I can always ask the surgeon if I change my mind.
Today was a pretty okay day. I got to go to the fabric store AND the grocery store (I love grocery shopping). I sewed up a messenger bag (Christmas gifty). We ate enchiladas for dinner. After I put my children to bed, I'll probably have a drink. Good times.
I'm trying to decide what's best for me in this moment. I need to be gentle to myself. I need to give myself permission to be sad. To be angry. To be frustrated. But I also need to find the happiness. The peace. The zen. Those things are doable.
One month from today, I'll be doing the old colon cleanse. Again.
For today? There is a trip to Joann's in my future, as well as some sewing. And perhaps some baking. I have a cookie recipe to veganize. ;)
Thursday, December 3, 2009
If you'd like to say goodbye to my asshole, make sure you do it before that date.
So we had our list of questions, but nothing the doctor said really surprised me. I've done enough reading to kind of know. He did a quickie exam, and was pleased with how well the chemo and radiation worked. We chatted about surgery, which will be done through a bikini cut, much like a c-section. Isn't that ironic? One of my biggest fears during childbirth was having a c-section and what do I get now? Crazy.
Let's see. I still have to do the colon prep, but instead of the massive jug of crappy moviprep, I get to do miralax and something else in gatorade. I'll meet with the stoma nurse the day of the surgery and the stoma spot will get marked. The surgery itself only takes about 1.5 hours. Hospital stay is expected to be about a week.
I don't know how I feel right now. On one hand, it's good to have a date. But now it's real. Someone is going to cut into me and see my guts and take out parts of me. It might take me a few days to wrap my mind around that, or at least get to the point where I don't tear up when I think about it.
Yeah, yeah, I already know that it's going to happen. It's just that if I'm not talking about it with the person who actually does it, I can be all "La la la, things are awesome! There's no tumor in my ass! La la la."
Things that make the reality more real, I'm not a fan of you right now.
But I'm going in armed with my long list of questions, and I honestly do want to know how the surgery will go down. I want to know things like where the incisions will be, what tubes are going to be inserted, whether I'm going to wake up with my asshole sewn shut. You know, just every day, run of the mill questions.
Then again, having a date, starting to plan things, that's good for me. I'll know how much time I have to get things done. I can get my to do list going.
It's scary though, the whole idea of surgery. Anesthesia is scary. Thinking about someone cutting into my body to take parts out is scary. People can tell me it's going to be all right until they run out of breath and I'm still going to be anxious about it. I can channel that anxiety to a point (why do you think I've been so productive the past week?), but man. It's hard. One of my biggest fears about childbirth was that for some reason, the doctor would have to cut me. For someone who hasn't spent more than a couple days in a hospital, this is just all so insane.
And unfair. I have to deal with this shit because why? Who knows, right? I don't spend a lot of time considering the utter unfairness of this. It's pointless, for one thing. And for another, I'm not the only person that this is happening to. In the time I've been on the colon club message board, there have been at least 10 new members. Ten new people who either have colorectal cancer or have a loved one who has been diagnosed. It's not fair for ANY of us. A 20 year old signed up who was just diagnosed. 20. When I look back at my 20 year old self, I don't know. I would have been ill equipped to fight through cancer, to say the least. I feel that sitting around feeling sorry for myself and angry at the world isn't going to help me.
You know what does help me though? I have the most awesome friends. And they pop up at the most needed times. I'm so very thankful for that.
Monday, November 30, 2009
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
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
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
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
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
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
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!!!!!
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
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
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
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
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
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
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
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
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
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.
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
Saturday, November 7, 2009
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
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
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
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
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
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.
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!
Saturday, October 31, 2009
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
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.
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
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
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
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
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.
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.
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
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 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
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??
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
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
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!
Saturday, October 17, 2009
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
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
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
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
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. ;)