Sunday, January 31, 2010

Let me tell you...

recovery is boring. I'm sick of this recliner and the view out the window. I have the internet, but man, even that's not really very fun lately. I get up for little walks, but my stitches hurt and it feels like my nonexistent rectum is going to fall out if I'm on my feet too long.

Isn't that weird? I don't have a rectum. Or an anus. Or a chunk of my colon (sigmoid, I believe). The stitches in my butt are bumpy, and it's just unnerving to think about there not being anything there. Eric and I were talking last night about whether or not the surgeon or either of my other doctors had mentioned rates of survival or what stage I'm at. They haven't. But I didn't ask. At one point I said, "Well should I have asked about rates of survival before I let someone cut me up?" I suppose it's late to have second thoughts, but there it is. I really do believe my surgeon when he said I could have this surgery or I could die. I'm so grateful for his accurate diagnosis and his confidence in my treatment. And I still don't want to know what my odds are, not really. In the cancer game, I think there is such a thing as too much information. At least there is for me.

Saturday, January 30, 2010


I had a crummy sleeping night last night, at least the second half. Sleeping on my back apparently doesn't agree with me much at all. I tend to sleep fine the first chunk of the night, wake up at about 3:30 or so for pain meds, and after that it's hit or miss. Tonight I tried laying on my right side, but that wasn't a whole lot better. So now I'm back in the recliner with what has become my no fail back hurting remedy: heating pad, ibuprofen, and a little walking/stretching before I sit down. It sucks that on top of everything else, my back is rebelling against my bed.

I'm noticing less hurting from the stitches, that's good news. They still hurt, don't get me wrong, but it's a little less every day. I'm dreading the doctor looking at them because if it's anything like the nurse looking at them...that hurt. I'm weary of hurty things.

While I was laying in bed considering whether or not to get up, I started thinking about my first chemo day. It's going to be a long day. We have to be at the cancer center in the morning for labs, then we'll see the nurse practioner. After that I get hooked up for 3-4 hours. I'll get the chemo bag again, and we'll be on our way to my follow up appointment with the surgeon. I think all that will really wear me out and I hope my stitches don't hurt too much. I'm worried about how I'll react to the chemo. It's more scary stuff in a long line of scary stuff.

I don't even know what to bring to chemo, I suppose I should figure that out.

Is it weird that I'm still in disbelief that this is happening, that it's really happening? It feels like a bad dream.

Friday, January 29, 2010


I totally dreamt about pooping stomas last night, and it was the weirdest thing. We've been having some pancaking issues with my stoma...wait, you don't know what that is? Oh wait until you hear this. Pancaking is when the poop comes out all mashy and doesn't make its way to the bottom of the pouch, but keeps building up around the wafer so when you take the pouch off, it's a big old poop pancake. Bet you'll never think of pancakes the same way again!

Anyway, in my dream I was having poop issues. We had the appliance off and were trying to do some cleaning and troubleshooting. Suddenly the output wouldn't stop, and it was full of corn! (Reese is obsessed with corn poop, maybe that's where this came from??) I can't even remember the last time I ate corn. I woke up thinking it was real and felt my pouch right away, expecting it to be full. It wasn't. It was only a dream.

I do tend to have very vivid, realistic dreams while taking this vicodin though. I don't know if that's normal. I get all sweaty at night too and my oncologist said that's a side effect of the vicodin as well. Eric and I were joking that it could be the vicodin, or it could be the low grade fever I've been running on and off, or it could be a menopause symptom. It could be anything! I'm not a fan of the night sweats though. Blech.

The plan for today...well, so far there is no plan. I'm going to enjoy the last few days of my mom's visit, that's for sure.

Thursday, January 28, 2010


I wrote some stuff and it sounded fake, so I hit the old delete button. It happens sometimes (that's what my Eli would say, haha).

Instead of the crappy crap I was going to write about, here I am with a relatively blank blog. I must confess, I feel like I've spent the majority of the last handful of entries complaining. Eric disagreed with me when I mentioned this last night, but maybe he was just being nice. I don't like bitching about stuff, I've always thought it's not a very helpful strategy in any situation. A little complaining is okay to a point, but I feel like I've been hardcore lately.

I will tell you though that recovery from this surgery has been hard. Comparing it to other difficult things I've done, I think it might just be Hard Thing #1. Radiation healing was hard, but by the time I was three weeks out from the end of radiation, I was mostly healed. I've never had major surgery before, but according to people who have had this or similar surgeries, what I'm going through is normal.

Maybe that's the problem. I don't want to be normal. I went through radiation/chemo doing better than the average person. Deep down, I want to rock and roll this, to be amazing, to heal super fast, to get back to life. It's not happening that way, things are slow, and I'm frustrated. I think I need some Serenity Now! Or more vicodin?

I know I need to give myself permission to REST. I need to be okay with asking for help. I need to respect my body's limitations right now.

Every day is a teensy bit better. I can do this.

Well, I'm off to pee in a cup. Positive thoughts that my UTI is gone would be appreicated, although I think it miiiiiiiight be hanging on. If I got some super bug in the hospital, I'm going to be super pissed and someone is going to get a strongly worded letter, man.

Wednesday, January 27, 2010

Three weeks, two weeks...

As in, three weeks since surgery, and two weeks that I've been home.

What? That's what Eric gently reminded me of while I was crying last night. Why does it feel like it's been an eternity? I've only been home for two weeks! Just three weeks ago I got all cut up. Well no wonder my ass still hurts. I still feel like someone kicked my ass, but I think I'm getting better every day. I know I need to be gentle with myself and let myself rest. I need to stop stressing about what I can't do. Before I know it, I'll be back to my old antics, running around town, wrangling my own children, cooking my own meals.

We did decide to gather up people to help with the kids, to make sure they at least get lunch. I don't know how I'll be feeling next week, but it makes me feel better to have our bases covered. And I'm sure my kids like to eat lunch, haha.

Tuesday, January 26, 2010

Fresh Air!!

Yes, my mom, the kids, and I got out of the house this morning. I was on the fence until about 8am, but then decided it would be a good idea to at least pop in to the LLL meeting. As with almost everything, I was right about it being a good idea (haha). I got to talk to friends I haven't seen in a while, and got to see everyone's babes. We did end up sneaking out before the meeting was over, but I think we were there for about an hour. I brought a pillow to cushion the chair, which sort of helped. There was still a great deal of shifting and standing once in a while too.

I do feel better mentally. It's hard to look at the same old messy living room (thanks, kids) day after day. I'm used to seeing friends more often, and the kids are used to playing with their friends. I can tell the outing tired me out a bit though. I'm ready for rest time!

Monday, January 25, 2010

Trying to hang in there

Recovering sucks. It takes too long and makes me feel useless. I'm not used to sitting around all day. I'm not used to my body hurting. I don't like not being able to take care of business.

I don't even feel like going out anywhere. My ass is still discharging, which is gross and smelly. My butt stitches hurt and sitting in a chair other than my recliner makes me cringe. I don't like wearing pajama pants out because my regular pants either don't fit because my belly is still swollen or don't work with my ostomy.

It is just one big bummer and I'm going to bitch about it.

I cried several times today because I'm frustrated and tired and feeling crummy. I was running a low grade fever again this afternoon. I took my last dose of cipro tonight, so I don't think it's still the UTI, but we'll find out when I retest in a couple days.

A wise friend of mine told me to quit worrying about tomorrow and just deal with today. That is such good advice, because realistically I don't know what the next day, week, or month will hold. but my mom is leaving in six days and I think I'm still going to need help with the kids, at least for part of the days when Eric is at work. There have been so many offers that deep down I know we'll be fine. I'm just so tired of dealing with all this shit. It makes you weary and irritated and tired.

It's not all wah wah wah around here though. Funny things like my stoma pooping on my foot last night. Or the kids deciding that they live in a musical and singing for an hour this morning. Or Eric saying funny stuff (which he does all the time...good thing my ab stitches are healing nicely!). I totally know everything is going to work out the way it's supposed to, but it's so easy to get mired in the day to day, parked in the recliner, low grade fever, no appetite blues. So easy.

One day at a time. This too shall pass.

I just wish it would pass quickly.

Sunday, January 24, 2010

Gettin' there

This morning I was able to be up and about long enough to do such things as discipline my arguing children, wash some dishes, and make hot chocolate. I'm a bit tired now, but it feels so good to be doing useful things. No marathons in my future, but being able to make hot chocolate for the kids in the morning is a very big deal.

The stitches do tend to hurt less the more I move around. Bending over is still hard, it reminds me a lot of the time right after radiation when I couldn't pick stuff up off the floor. And you'd be amazed at how often the muscles in your abs and butt come into play doing ordinary things. I would like to figure out how to shave the three weeks' worth of hair off my legs, but I guess it's winter and maybe no one will notice. I keep hearing that my leg hair will keep me warm, but I don't know about that.

I don't talk a lot about my belly stitches. They are getting the shaft, but so far I haven't had any trouble from them. Other than the tape beginning to peel off, there's not much to tell. I do have a very tempting awesome scab where the drainage tube was, but I promised Eric I wouldn't pick at it. And of course my stoma is in my belly, but we seem to be getting along just fine so far.

My appetite is slowly coming back. I'm not feeling so tired all day long. Could this be me bouncing back? I think so and am hopeful. It probably seems silly that I'm getting excited about things like washing dishes. The longer you sit in a recliner, the more you long to just get back to normal.

Saturday, January 23, 2010

Oh crap.

I was on colon club tonight, reading random posts, and of course read about a few different experiences with chemo. Why don't I just close the post when I start reading that shit? It just makes me nervous and anxious about chemo coming up. So now I'm all freaked out. This is all just very scary, and although I've come very far, it doesn't make things less freaky. I think it actually makes it harder for me to block out the fact that things freak me out because I'm so weary of everything. Everything. I'm weary of feeling sick and of being in pain. I'm weary of doctor's appointments and waiting in uncomfortable chairs. I'm weary of not being able to take care of my family the way I'm used to doing. I'm weary of not being able to do what I want to do.

Is it going to turn out okay? Of course. Does that help me feel calm about chemo? Um, NO. Luckily my ass stitches keep me occupied because they hurt. And my ostomy keeps me busy because, well, it's busy outputting away. I have a lot on my mind right now, but chemo is sneaking in there too.

My stoma passed gas so loud last night that it scared me. No really. I was getting ready for bed, and I was exhausted and not paying attention. I took my shirt off and the stoma went TPTHHHHHHHH. It was so loud, I jumped. Nice, huh? Maybe it's trying to get me back for eating lots of lentils yesterday, I don't know.

I've been eating lots of mashed potatoes lately. I crave them. Luckily I have a mom who doesn't seem to mind making mashed potatoes, and they are so so good. I eat a lot of other stuff too, but mashed potatoes taste so darn awesome these days. I have no idea what that's about.

Eric helped me change the wafer backing last night. I think I could do it myself in a pinch, but it's nice to have another set of eyes so when the poop just randomly comes out we can catch it with a wipe. So far I don't have a Set Time for Output, it just comes out whenever. I'm considering irrigating in the future, that should be an adventure.

Right now the most adventure I have is getting up from my chair and wandering around the house. Or taking a trip to the bathroom. Recovery is pretty boring. I'm thankful for friends who stopped by last week. I'm hoping to get out a couple times next week, but I'll have to see how I feel. The antibiotics seem to be kicking the UTI to the curb, I'm glad about that. I still get tired easily, it's frustrating for me. I'm ready to take care of my kids again and take care of my house again, but my body sure isn't. At least, my butt stitches aren't, haha. Ouch.

All right, time for cipro!

Friday, January 22, 2010

Another day

I'm feeling somewhat better today, still running a low grade fever, but at least peeing is easier. My poor bladder has really been through a lot, man. It will be interesting to request the hospital records and see how many times I was actually cathed.

Eric is going to a wake tonight for a coworker's relative who died from cancer. How fucking scary is that, to hear stories of people with cancer who DIE? So far we have been just unbelieveably fortunate in the timing of everything and that I've responded well to treatments. I can't stress enough though, if something in your body isn't right, get it checked out. I'm not saying every little ache and pain is going to be cancer, but pay attention to your body and take care of it. You only get one, yo.

Getting around is starting to come more easily. I still get tired fast, I can only do things that go fast. I can, for example, make a smoothie, but am unable to hang around for any of the clean up. I can heat up mashed potatoes (my new favorite food) and get a glass of water. Little things. If I really really have to, I can bend over and pick something up, but it makes me awfully cranky. One day at a time.

Thursday, January 21, 2010

and the chemo shall start...

in about two weeks. The date my onc is shooting for is February 4th.

I'm going to complain about the waiting however, before I talk about the actual visit. The waiting was freaking long. We waited in the back office for almost an hour, no joke. Do you know how hard those chairs are??? At one point I looked around the room and realized there was a pillow on the examining table! I have never been so glad to see a pillow. Unfortunately, it didn't make sitting much more comfortable.

Luckily the good news outweighed the painful sitting. The treatment before surgery killed off a lot of the cancer. Originally I had 4 lymph nodes affected, but three of them were taken care of by the radiation/chemo. The oncologist said my hemoglobin is back up to 10.1, so awesome. I'm slightly anemic, that was the most notable thing about my bloodwork.

Eric asked some questions, and it was decided to do the treatments on Thursday. His plan is to take Thursdays and Fridays off, at least until we know how I'm going to react to the chemo. That way I'll have some days to recover before he has to go back to work.

Oh! Guess what else? I have a UTI! I've had a low grade fever for a few days, some other symptoms, and it pointed to a UTI. Sure enough, my sample came back positive. So now I'm on some antibiotics to take care of that, and I'm hoping I'll feel tons better once that starts to clear up. Then I can get on with the actual healing.

Not a whole lot else...quite a lot of reclining relaxing and drinking of cranberry juice. Maybe when the date of my chemo start sinks in I'll have some feelings to write about. Until then, hope you have a great day!

Wednesday, January 20, 2010

I'm irritated.

I think I might start naming my blog posts based on my feelings. It's easier than coming up with something snappy. hah.

Today was one of those bad, good, bad, good days. I'm feeling kind of icky, have a low grade fever (99.5, 99.9, hovering in the 99's...which if my regular temp is 97.5, I consider a fever...). There are suspicions of a bladder infection, and I was worried about how the stitches in my ass are doing. The discharge got kind of stinky suddenly.

So as was suggested, I called the at home care nurse, who came to see me. Sorry at home care nurse, but your visit wasn't that helpful. She did put me in contact with my surgeon's nurse, who basically said the surgeon isn't worried about infection in stitches until my temp goes up to 101 and the area feels warm. Fair enough. I demanded that the pee I precariously collected earlier today (you try peeing in a cup while minding ass stitches and pushing yourself to pee) be tested for a UTI. My wonderful, awesome mom is taking my pee on a ride across town as we speak. I should hear something Monday.

What? Monday?? It's doubtful that the pee specialists will get to it today yet (it would have been nice to have someone tell us to get it to the hospital earlier, but what can you do?). It takes time to see what grows in the speciman. I get all that, it's just so frustrating. I know my body, I'm very sure I have a UTI. At the very least, the low grade fever I've been running for the past 24 hours means that something isn't right.

Ah well. We'll get it figured out. In the meantime, I have blankets and a heating pad when I feel chilly.

And I have my mom taking care of me and of my family. I can't even describe how much I love her and how thankful I am that she's here. Who else would make me mashed potatoes in the middle of the day? Who else would drive my pee across town? Who else would be in charge of tea all day long? And drinks? And helping my kids? And doing laundry? I can literally do nothing right now, we'd be sunk without her, for real.

So amidst the crappy things that happened today, my mom was one of the good things. We also got lunch from a good friend, and I know Eli and Reese loved playing. Not a total loss of a day.

Tuesday, January 19, 2010

I'm impatient.

I'm impatient to get back to normal. To get back to yoga in the mornings. To be able to get down on the ground and play with the kids. To cook dinner, to clean the house, to do laundry. To take a more carefree shower. To go places we usually go, see friends we see often. To not hurt so much anymore. To wear clothes that are NOT pajama pants.

It's hard to be slowed down forcefully. It's hard to take the time I need to heal.

I hope today gets better because I feel kind of crummy about it so far.

Monday, January 18, 2010

Restricted diet? What's this restricted diet I keep reading about on UOAA and colonclub?? My doc told me to eat whatever sounds good. I keep coming across people who ate toast and potatoes for weeks and weeks. I'm pretty glad to be eating my lentils and beans and general tso's tofu. I wonder if my surgeon is just more laid back than others or more progressive or what?

I went out today! Reese, Eli, my mom, and I went to the natural parenting store for my crafting and cooking group. It was soooooo nice to get out of the house, and it was sooooooo nice to get home to rest. Sitting was uncomfortable, even with the pillow I brought along. I had to break my No SweatPants Rule in public though. :( Sad face. I tried on three pairs of jeans before deciding that I'll revisit the jeans thing at another time. They all sit either right on the stoma or at some point that isn't comfortable. Boooooo. I told Eric last night that if I was a hoarder, we'd be golden because I'd still have my maternity pants (you know, instead of giving them away ages ago). My mom bought me a belly band today and I'm excited about that. If I'm going to do the jeans though, I might have to find a different brand. Low rise? Perhaps. I do have some low rise cords from ages ago that I have been hoarding just in case they fit someday (hahahahahahahahaha) because I love them. One of my friends altered her pants so they were bigger (adding fabric to the sides), and I would like to do that but it could be a while before I can sit in front of a sewing machine.

I was telling my mom too that if it was summer, I'd be all set with my skirts and shorts. Too bad winter in WI lasts the whole of your life (or so it seems).

If you have a favorite low rise pants brand, let me know! I'm just the tinest bit resistent to buying maternity pants because I don't want anyone to mistake me for pregnant. :)

Sunday, January 17, 2010

Just a quiet Sunday

I decided this morning that I wanted off the vicodin. I have no rational reason for deciding this. Wait, I do. I'm paranoid about constipation. That and I don't like the fuzzy feeling associated with vicodin. So Eric and I reasoned I could alternate tylonel (vicodin is tylonel, so I hear) and ibuprofen. That lasted until about 2pm. It's too soon, and I guess I need to be okay with that for a little while longer. At least if I want to do things like shower, because taking a shower was kind of crummy today when I was off the vicodin.

Let's see. We changed the wafer today. The stoma looks awesome, in the opinion of someone with no medical training and no previous knowledge of stomas. My mom, who is a nurse, said it looks good, so I trust her. I'm wearing an opaque bag today, and I feel so much better about it. But on the other hand, it does bug me a little not to know what's going on in there. I can't win! For going out though, I think this option is much better.

The butt stitches seems good too, again based on no knowledge of stitches whatsoever. They're holding together, and that's what they're supposed to do. I could live without the dripping of blood, which my doc assures me is normal for up to a month. My cloth pads are getting a work out and that makes me happy.

So I'm going to try to go out tomorrow morning. There are conundrums. What to wear? I lost weight at the hospital, so I will need to evaluate my pants. Bringing extra ostomy supplies with me. Feeling good enough to go out in the first place. Mostly I'm excited about going somewhere and doing something.

That was today. Tomorrow's another day. I'm feeling better about things. One day at a time.

Saturday, January 16, 2010

Sometimes the ostomy bag makes me feel not exactly clean.

There, I said it. We're so trained as a society that poop goes in a certain place that when it's in any other place it's disgusting, dirty, gross. Pick an adjective. If there's anything in the ostomy bag at all, I feel weird about it, even though I *know* it doesn't smell and it's normal, and it doesn't need changing until it's 1/3 to 1/2 full. We did get a some samples of bags that aren't see thru, and I think I would be more comfortable with those. I can't imagine anyone wants to see poop in a bag when I'm out in public. I do have a source for a belly band locally, and I think that will be a stylish way to hide the ostomy bag.

I started crying though talking it out with Eric and my mom. I don't want this to feel dirty or icky, because it's normal and I know that. It's okay. And yet there's the lingering emotional worries about acceptance and how other people will react. Will people know? Will they care? I feel like I'm back in middle school worrying about whether the shoes I have will make me look uncool (they almost always did, as a side note...I wasn't exactly a cool kid, haha).

My thinking mind says that if people don't like it, then fuck 'em. Their problem, not mine. My emotional mind gets more sensitive and can't quite get to that point. Yet. I think it will happen eventually. Right now my emotional mind is still feeling kind of sad that I have to deal with this at all, that it's my life now. Pouting, you know. Feelings, whatever they might be, are okay in the here and now.

I'll be okay. Really. But maybe try not to point and laugh at my ostomy, okay? I'll either start crying or tell you to fuck off.

Friday, January 15, 2010

Thanks, Dear

Listen up, ladies. New prerequisite for marrying someone is that they will help you change your ostomy bag in the event that you should ever need one. I know that someday soon I'll be able to do the changing by myself. For now, I need help, and I have the most amazing man by my side helping and encouraging and supporting me. I consider myself very fortunate.

I may as well tell you, today was the first serious output day of the stoma. Believe me, it's a good thing, since yesterday the nurses were a tiny bit concerned that I hadn't had much output at all since early on in my hospital stay. It's so strange to poop out a hole in my belly. It's so in your face (well, not really, unless someone was really short, but you know), and visible. It's not hidden by sitting on the toilet. It isn't nearly as neat and clean as crapping in the potty. An ostomy forces one to deal with poop head on, whether you want to or not.

I thought all kinds of things this morning. I worried about smell, the bag falling off, the mess. My gut reaction was, "Holy hell, that's poop! Get it in the toilet!"

It all turned out okay, as I'm sure we all knew it would.

Can you believe that even NOW, I still sometimes jolt to reality and think, "This is really happening to me."

There are funny moments, like when Eric attached an ostomy appliance on Reese. We joke about making a date to change my applicance.

We've come a long way, and I think we're doing pretty okay.

Thursday, January 14, 2010

home again and hospital thoughts

Yes, I am home. I'll admit I was a little nervous about coming home, about not having nurses right there to help me. It was such a relief to walk in the door though, to my children and my comfy chair and my own bed. And showering. You don't know how awesome showering is until you aren't able to take one for seven days. It was rough last night, I won't lie. I cried because my Chinese noodles didn't taste right, and then yakked into a bucket because I got nauseous again. There's an emotional component about being hospitalized, and I think it just started to catch up to me last night finally. I usually don't cry over noodles.

Anyway, I thought about how to approach blogging about the hospital stay. Eric did such a fantastic job with the details and honestly, I don't remember much from the first few days. I remember low points, like losing it in the pre-op room and the nurse givinig me a sedative. The first time I walked from my bed to the doorway of my room was awful. Sitting on the toilet, trying to pee but being unable to get anything out. Being straight cathed numerous times. There were good points too, talking and laughing with Eric, who stayed with me the whole time, every night. Visitors, like my children and my mom. The nurses overall were amazing and helpful and supportive.

I will just leave it at the fact that this surgery was NOT easier than chemo/radiation. To the people who suggested it might NO. It was hard, probably the hardest thing I've ever done. I used to think that childbirth was the hardest, but at least the pain was over sooner, and I got a baby out of the deal. This time I got an ostomy bag, many stitches, and a script for vicodin.

If I think of other stuff, I'll post about it, but for now, I'll leave you with Eric's posts.

Tuesday, January 12, 2010

Yes, it's me!

Eric did such an awesome job keeping my blog up to date, I so appreciate that. Especially since the frst few days post surgery are a little fuzzy. IV pain meds will do that to you.

So I think we're on the home stretch of the hospital stay. All tubes are out, all IV meds have been discontinued (darn! good drugs, man, good drugs). The biggest problem, in my opinion anyway, has been my difficulty in peeing. For two days after the catheter was taken out, I had to be straight cathed because I couldn't pee. Everyone is mystified, for the most part. Today my doc ordered flomax to see if that would help, and I was able to go a couple of times so far. The trouble is that if I'm in pain it's hard to sit on the toilet and be patient. oh well, it's almost vicodin time.

I thought I would feel radically different somehow after surgery, that it would be some huge major change. It's not, really. Learning how to use the ostomy stuff hasn't been terrible at all. My body, aside from the pain of surgery and healing, still feels the same. If I didn't know it (although I have no picture proof, sigh), I'd still think my guts were all in place. It was an interesting revelation.

Speaking of the stoma, it's good. We're getting to be friendly and it really is pretty easy. The ostomy nurses are awesome (Hi, Ostomy Nurses!!!) and knowledgeable and patient. Eric and I feel confident we can do this on our own at home.

Home? Maybe today, but probably tomorrow. One day at a time, right?

Monday, January 11, 2010

Nurse Arm-Strong

Posted by Eric for Sheri:

A nurse just came in and disconnected the IV from Sheri moving her from morphine to Percocet. This nurse is very pushy and we kind of wonder if things would not be moving along faster if we had a nurse like her yesterday or even Saturday.

So anyway, Sheri was given the pills for pain and promised a walk down the hall (pretty much whether she wanted to or not) then another try at the toilet. If no luck by then, there will have to be another straight-cath to drain the bladder.

Overall pain is down and food is staying down and it appears intestines are moving. Everything seems to be working except for the bladder. Blood count is down to 8, but the nurse was happy with the slow decline and suggested things are leveling off. She did refuse to take out the line in the back of Sheri's hand just in case 2 non-compatible drugs should have to be administered prior to departure.

It has been 24 hours since the move to the new room and I hope we get a discount because the construction noise is horrible. We are further away from the new building but the hospital must be remodeling something on one of the floors below us.

Doctor Approved

Posted for Sheri by Eric

The surgeon stopped in today and liked the progress. He suggested that depending on how the day goes, Sheri could go home late today if she felt up to it, otherwise she can go home on Tuesday. Getting up and moving around is getting easier, however, her bladder still refuses to work. She had her third straight-cath this morning and is coming up on a forth after they scan her bladder to determine volume and straight-cath need.

While Sheri wants to go home, she is pretty sure it won't be today.

Sunday, January 10, 2010

Still in the hospital

Posted by Eric for Sheri

Sheri's hemoglobin was down to 8.1 as of this morning, but all the tubes are out. There was still a lot of drainage coming out of the J-P drain in Sheri’s side, but the nurses are confident about the removal. Found out later that if you wait too long to remove the drains they could actually heal into the wound. With the catheter out, Sheri now has to get up and walk to pee and that should help kick the healing in gear. Getting up to pee sounds easy but other than the pain, her bladder refuses to work with her. Right now it is 10 PM Sunday night and we are quickly coming up on the second straight-cath to drain the bladder since this morning. One exciting project of the day was to change the ostomy pouch for the first time. Neither of us could say that we were very confident in our skills, and we even had to pull up the instruction after we were done to make sure it was done correctly. Apparently we had been listening after all, since it appears that we did everything right.

Good news is around every corner: it is getting up gets easier every time; the first change of the ostomy pouch happened today; Sheri was able to eat solid foods today including a couple of bites of cracker and some mashed potatoes; she was able to walk to the room's door and back and everything is falling into place; however slowly and painfully.

Sheri may not be able to go home Monday, but Tuesday (?) or Wednesday (?).

We will see.
Posted by Eric for Sheri:

One tube out, 2 more to go; the catheter came out this morning and we got a nice bedside commode to use. The 2 drains are supposed to come out today as well, but the J-P drain seems to fill up awfully fast to be removed. The nurses emptied it at 6:30 this morning and I see it is already full. Nothing is staying down yet, but guts need to move.

Coughing is easier today so that is a good sign things are healing.

Saturday, January 9, 2010

Posted by Eric for Sheri:

Per the doc, all the tubes will be coming out on Sunday and Sheri needs to get moving more in order to begin to think about going home. The catheter will need to come out to minimize the risk of a UTI, but she at the same time would have to be able to walk to the bathroom, which is currently out of the question. He removed the dressing on the bikini-line incision stating the incision did not need any dressing, unless Sheri feels better with it. Sheri is indifferent. There are currently drains in both the front and back; the back drain will come out easily, however the front drain will cause a bit of pain when it is tugged out.

The breathing exercises are going well, and today the nurses commented that her lungs were finally clear. Nausea continues to be a problem, but the doc was unsure if the nausea was caused by the morphine. He thought perhaps, because of the timing of the nausea spells that it was ultimately caused by Sheri’s insides continuing to not function properly. Several meds were prescribed upon his review that will help get the guts moving again. The nurses have been hearing sounds for a couple of days now, but items that are drank don’t appear to be going anywhere except back up and out.

Two (2) units of blood were given last night with good results; the heart rate is down and hemoglobin is up to 8.5 today and the doc is borderline on given another unit but wants to wait and see. He is not concerned about the headache that developed overnight and continues this morning.

Friday, January 8, 2010

48 hours down

Posted by Eric for Sheri:

First thing is first, Weather report: Today was sunny and not warm. It is currently 16 degrees as I type this.

Second, we just passed the 48 hour mark and the doc checked in with the official report. The testing on the 13.6 inches of specimen showed that all the margins were negative for cancer, however, 1 of the 23 lymph nodes that were removed was positive. With that being said, he is confident that all the treatment done so far was the correct course of action and by being aggressive we will have taken care of this with the first swing.

Hemoglobin is low, 6.5 so a couple of units will be transfused this evening. Nausea and vomiting again this evening; so much for the hope that last night was the last of that, but we got some pain meds and nausea meds and Sheri is once again sleeping. Unfortunately, vomiting apple juice means the end of that beverage option . . .

Thursday, January 7, 2010

Entering Day 2

Posted by Eric for Sheri:

So much has happened today I don't know where to start; I guess I will start with the morning.

The morning started as all mornings do with the sun shining and birds singing . . .nope I lied, this morning was roughly 15 degrees and snow was starting to come down. The hospital was relatively slow hanging around for the ostomy nurse. Wouldn't you know it but as soon as I left the room to get a bite to eat (I was frickin famished) she stopped in. She had one other stop, so aobut 45 minutes later we finally met with the ostomy nurse who changed the wafer and showed us how to clean and prepare as well as what to look for and what to expect. Baseline pain meds were upped due to overall pain levels. Itching started from the morphine, but Sheri was less than perturbed so dismissed the Benadryl offer.

The afternoon was not sunny either but rather slick roads and accumulating snow. The hospital time started well with a visit from Reese and Eli, both of which had a great time watching the workers outside working on the new 8 story addition. Eli commented that it was a man -lift and not a party-lift and Reese concurred that the 8 workers standing around the man-lift would not all fit. They took leave of Mom with a trip to the cafeteria and picked up some treats then left after signing mom's leg pressure cuffs and commenting on all of the really neat sites in the hospital room. They also left some really great jumbo flowers that are now hanging in the room thanks to Auntie Sarah and even the nurses comment on how good the room smells with the infuser that Auntie Amanda brought in. No trip to the hospital is complete without Eli giving a good tug on the string hanging out of the wall in the bathroom. Lesson learned, when I give a speach about not touching the strings on the wall, BOTH kids need to be in attendance, not just Reese.

The afternoon did not end with high temps and melting snow, but rather slid downhill. Problems like itchy skin and nausea both possibly due to increased med levels were present all day, however now hemoglobin and blood pressure were low. Reducing meds as well as a bolus (large push of iv fluids) helped the itching, nausea, and dehydration issues (ironically vomiting also helped the nausea) and ultimately pushed Sheri to sleep. I think more than one of the meds given late in the day had sleepiness as a side-effect so they no doubt helped as well. The nurse just stopped in for the 8 hour Toradol injection and Sheri did not even twitch. No blood was given later in the day so hemoglobin must not have dropped any further.

Really good news of the day is that all this activity with the chemo port has broken loose the fibrin "gate" that was allowing injections to flow in but not allowing any blood to come out. Being able to pull blood out of the port saves Sheri from having to be poked with a needle at all during her stay in the hospital; 'stabbing with needles' is one of her least favorite games, drinking or not (unless done by a qualified and licensed tattoo artist, of course).

Recovery - Day 1

Posted for Sheri by Eric:

Recovery so far has been filled with itching skin from the morphine, almost puking when the nurses stood her up and so many clicking and beeping noises in the room that she was not able to sleep last night. She has a slight fever and so was started on antibiotics to treat "anything that might be brewing". Tonight she is going to ask for some meds to sleep.

Today, however, we have a lot to look forward to. The ostomy nurse will be stopping in today to change the ostomy wafer (Google it) and Reese and Eli will be stopping in after lunch to see their mom. The place is pretty small so I don't know how they will fit, but an awesome man-lift just started working right outside my window as I type this so I know where Eli and I will be . . . right next to the window. Seriously, the view has something to be desired; we are on the 3rd floor looking at the new 8 story addition that is going up so that is the only thing I can see. Correction, I just tested it and with a little neck craning and some weird Yoga maneuver I can see sky, out of which we should be getting 3-5 inches of snow.

Wednesday, January 6, 2010

Surgery Day - continued

Posted for Sheri by Eric:

Sheri made it through surgery and is now in her own room and recovering. Sheri has no pain other than a lower back ache, but is currently on strong anti-inflamatory as well as morphine. Everything went well with surgery and is expected to recover well.

Surgery Day!

Ironically, I'm not nearly as freaked out as I was yesterday, and the day before that, and the day before that...

Don't get me wrong, I'm still nervous and scared. Last night I woke up at about 3:30am and thought, "In about 12 hours, surgery will be over" and I felt so calm. It's going to happen, I can't stop it, I don't want to stop it (because the alternative to surgery isn't pleasant).

I'm still pooping water, and my guts are protesting, rumbling around. And I'm hungry. Wah, wah, wah, whine, whine, whine. Colon preps, it seems, are not ever very much fun. I drank a few swallows of water at about 3:30am, and I'll try not to drink anymore. In my tradition of post-colon procedures, I'm thinking of asking Eric to bring me a Taco Bell bean burrito (no cheese, please!). I won't be able to eat it, but I could sniff it. Who knows? Perhaps sniffing a Taco Bell bean burrito is a previously unknown way to get your bowels moving instantly, resulting in a super short hospital stay!

This morning will be about shaving my damn legs (haha), getting my shit together, and trying not to worry too much. I have my list of stuff to take to the hospital, and I think I'm going to have to unpack and repack, crossing items off. That will be helpful in finding things Eric has been tossing into the bag. The other day he put a hippy dippy happy cancer stories book in there. And yesterday I found a Sexuality and Cancer pamphlet. Isn't he just a riot??

I'm pondering writing "Pictures Please" on my belly. A friend suggested it after I explained to her how I wanted a picture of the tumor and my parts. My surgeon said he would try to get a picture, but that he might get busy (you know, OPERATING) and forget. Obviously my priority is a successful operation, but pictures. That would rock. It would be like the wisdom tooth that I kept in my desk drawer and showed my students every so often when I used to teach 5th and 6th grade. I'd carry a picture of the tumor around and show it off like a third child. Mostly though, I'd like to see what I no longer have. Those guts are mine, after all. I'm a little miffed that they can't be shown to me personally, but I suppose rules are rules regarding biohazard material.

I'd make a goal not to cry at all today, but honestly, that's probably not a reasonable goal. But you know, I'm hardcore. I've had countless ruptured ovarian cysts, birthed two children with no pain medications (and one of those was a pit birth!!!), survived a car accident...I know I can do this.

All right then. I'm not sure there will be time for another update before we leave for the hospital. The positive thoughts and prayers and kind messages are all so very much appreciated. My friends and family have been just so kick ass through this whole shitty cancer thing. I'm looking forward to the time when I can pay that forward.

Tuesday, January 5, 2010

Well, colon prep done. I'm hungry, man. Starvin' marvin'. Way more so than with my last prep, but maybe that's because I ate a huge lunch that day. Apparently I missed the direction that said "liquid diet" the morning of the prep before my colonoscopy. Whoops. Since this is a little tiny bit (!!) more serious than a colonoscopy, I ate much less. As in, I had about a cup of smoothie for breakfast and maybe 1/2 cup of hummus and four crackers at about 10:30. Then I drank tea and water and Miralax/propel.

I'm not exactly sure how I'm going to sleep tonight. My bag is half assed packed. I still need to shave my legs. And figure out what to wear to the hospital. And hug my kids a bunch of times.

I've gotten many really sweet emails and messages on Facebook. If I didn't thank you, it's because I'm trying not to cry a bunch tonight. I'm so sick of crying, so I'm trying not to. Your words and thoughts mean a lot.

Stay tuned for my starvation ramblings in the morning. I'm sure they will be both entertaining and enlightening.

Just in case...

I've had several emails asking about updates while I'm in the hospital and visiting and such. Eric will update the i'msorryforcursing site on Caring Bridge when he gets a chance. Basically, we'll be at the hospital around 11am, the surgery will take place in the early afternoon, and then I'll be recovering. We're asking that no one visit on Wednesday, and only immediate family on Thursday. I'll just be drugged up and I probably won't be nearly as funny and charming as I am normally, so you won't be missing anything. After that, if you'd like to hang out in a boring hospital room, forced to watch episode after episode of House or ATHF...well, come at your own risk. ;) I have no idea how I'll be feeling though.

The hospital has wifi, so I anticipate getting back online myself when I'm feeling up to it.

I just wanted to let people know what's going on. :)

And now back to your regularly scheduled colon prep!

Holy's prep day! message board friends and facebook friends have been hearing about it allllll morning so far, and I haven't even downed the tasty colon prep. It's just miralax and propel this time, so not too exciting.

I am so fucking keyed up, it's almost ridiculous. And I don't think I can blame it all on the coffee. Last night I did a little self medicating of the vodka variety, and although vodka is a clear liquid, I don't think I better do that tonight. Getting dehydrated the night before surgery probably isn't a great idea.

I have some stuff to do this morning to keep my mind occupied. Bread needs baking, hummus needs to be made. My desk is a disaster. I want to take a bath and shave my legs. I need to pack.

Gah. If there was ever a time I wanted a magic fast forwarding machine, today and tomorrow would be it.

Monday, January 4, 2010

I have tears running down my cheeks after yet another wonderfully kind email message from a friend. Everyone says such nice things, I just...I don't know that I *am* all those adjectives people have been throwing around. I sure as hell don't feel brave or strong or amazing. I'm sitting around fantasizing about sneaking away at the last second and hiding in a hospital closet for cripe's sakes. I'm not going through all this shit because I want to, because I didn't have anything better to do. I *have* to. I would never choose this. Never never never. So I don't feel like I'm any stronger than anyone else. I'm just keepin' on keepin' on, you know?

But seriously, do you think my hiding in the closet scheme will work? Yeah, I didn't think so either. Shit.

The moving sidewalk I'm being forced to march on certainly isn't getting any slower, and here we are at two days. Two. Sometimes I think it would have been easier if this had been Emergency Surgery. Oh no! Right now this second, you have to have Emergency Surgery! No, you can't think about it for weeks and weeks, stressing about it every ten minutes! Right now! See how that might be better? I think if I wanted to torture someone, I'd hang something like this over their head for a few weeks.

I don't know. I'm going to be okay. I'm freaking out, but I'll be okay. Eric is the awesome strong one, just so you all know. He's the one weathering my freak outs and keeping calm and reminding me that I can do this.

So in two days...Surgery (play the dark music here). But for today, I get to take my children and my mom to one of my favorite group gatherings. I get to make and eat vegetable pot pie. And perhaps I'll get a little tipsy tonight. In other words, I'm going to have a good day, so I hope you do too!

Saturday, January 2, 2010

A friend emailed me today. In her email she said, "Aren't you glad you found this cancer? Be grateful for the year of 2009, for finding it sooner rather than later."

I've been going around thinking that 2009 was a pretty shitty year, but you know, my friend is right. The timing on cancer is obviously never good, ideally you don't want it at all. But if the tumor has been hanging around my rectum for 3-5 years, the timing on us finding out is actually good. If it was found 3 or 3.5 years earlier? No Eli. If I hadn't found out when I did? It would still be growing, maybe even spreading around. It's an interesting way of looking at it, that's for sure.

Who wants more song lyrics? I had my Turtlepod on shuffle in my P!nk CD collection and got to listen to 18 Wheeler.

You can push me out the window
I'll just get back up
You can run over me with your 18 wheeler truck
And I won't give a fuck
You can hang me like a slave
I'll go underground
You can run over me with your 18 wheeler
but you can't keep me down down down down

Can't keep me down, down
Can't keep me down, down, down
Can't keep me down

Hey, hey girl! Are you ready for today?
You got your shield and sword?
Cause it's time to play the games
You are beautiful
Even though you're not for sure
Don't let him pull you by the scar
You're gonna get your feelings hurt

Good song, right? You're welcome.

4 days. I'm still nervous and freaked out, but you know you can't keep me down.

Friday, January 1, 2010

Things I have tossed into my hospital bag...

So far.

gum (I hear this helps your guts start moving? what the hell, right? I like gum)
Hello Kitty slippers
a blanket from home
my three favorite books: Jurassic Park, Silence of the Lambs, Circle of Friends

Huh. That's it so far! I've been more focused on getting the house in order than packing. Today I had all our homeschooling cupboards emptied out, and reorganized all that stuff. I cleaned Reese and Eli's room really well. Eric and the kids helped me get the basement picked up. Hopefully we'll get the main level picked up, vacuumed, and mopped before my mom arrives on Sunday. When things are clean and organized, I feel better and more peaceful. I want the house spic and span shining clean before I go to the hospital on Wednesday.

On Wednesay. No dates anymore, it's too close. But if anyone is counting, I have five more days. My strategy to not freak out is to just keep busy. Tomorrow I'll be spending a few hours at a spa getting a massage and a body polish, thanks to Eric's coworkers. Maybe I'll sneak out Sunday morning to go to the bookstore and drink some tea. At some point someone should go to Walgreens and get the colon prep supplies.

Eric was looking at the tv listings, and we decided I need to be home by Monday evening, January 11th, because that's when our primetime shows restart for the season (House!!!! New House!!!!). I think that's a good goal, but I'll be okay if it doesn't happen. We do have DVR, we're not a pack of animals.

I'm thinking a lot of things, feeling a lot of things, trying not to freak out too much. Trying not to cry too much. I've cried so much since the beginning of September, it gets old.

Hey, Sheryl Crow sings a song about that! Want some lyrics? Here you go:

Wouldn't it be good if
we could hope a flight to anywhere
say so long to this life
so much for pretendin
bad luck's neverending
and now I know that

It could be worse
I coulda missed my calling
Sometimes it hurts
But when you read the writing on the wall
Can't cry anymore

And now I better feed my children. :) Happy New Year!! Let's hope 2010 is way better than 2009.