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Day 41 Post Cystectomy

12/31/2019

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OK - 5 days in a row of feeling good so I'm calling it - I'm at least at 80% now!  I'll complete this entry and then I want to do a full entry tomorrow of everything I've learned and wished I had known!  Hopefully, it will help someone else!  I slept fantastic last night!  I'm finally able to sleep on my side again - I think I've been able to do it consistently for the past week or so - and I'm loving it!  Tim and Nicole and Abby got up early this morning (I think around 7am) and went to Starbucks together to hang out.  Good for them!  I slept in until around 8:30am - loved it!  Then I had some nice journaling time and prayer time - it felt luxurious!  Tim and the girls also went to Walmart and stocked up on food supplies, so when they got home Tim made a big breakfast for everyone - scrambled eggs, bacon, toast, orang juice, cranberry juice, blueberries, blackberries, raspberries - it was a true feast!  I cleaned up and started the dishwasher, and then we all got ready and went to the Georgia Aquarium!  

I did great for the first hour walking around the Aquarium and then I became extremely tired.  I thought about just going out to the van and resting until the place closed at 4pm, but then I was going to miss so much!  So Tim got the bright idea of getting a wheelchair!  I guess I always think of wheelchairs for people who CAN'T walk.  But it made perfect sense for me, too!  Once I got in that and they could wheel me around, I had a new lease on life!  I felt guilty tooling around in it, though, because we got priority seating in the dolphin show and people looked on me with pity and were falling all over themselves getting out of our way.  I wanted to carry a sign that said, "I'm really not that bad - I can walk and all but I just had surgery a few weeks ago and don't have the energy to spend the whole day here walking so that's why I'm in this wheelchair."  I don't know why I felt the need to explain, I just did!  Especially towards the end of the day when we all went to the bathroom.  It was definitely time to empty my bag, so we parked the wheelchair outside of the bathroom and I did my best attempt at looking like I could barely walk.  I normally don't care too much what people think, but it just seems wrong to impersonate a handicapped person!  Anyway, we left there around 4pm and found a Subway around the corner and were able to park on the street right outside of it!  We all placed our orders and Tim and Nathan walked across the street to Centennial Park to play some frisbee.  Once we got our food the rest of us joined them in the park where Nicholas and I froze to death even sitting in the sun while eating our sandwiches and Tim and Nathan played frisbee in between bites while Nicole and Abby chatted away while consuming their subs.  It was actually a lovely atmosphere had it not been so darned cold (I think it was 55 degrees - brrrr!!).  As soon as we were done Nicholas and I made our way back to the vehicle and waited on the others to finally mosey along.

From there we were just a hop, skip and a jump away from the Mercedes Benz stadium (the venue for the Passion Conference) so we dropped them off and came back to the Airbnb.  We had a lovely evening snuggling and watching one of my husband's favorite movies, Tombstone (with Kurt Russell and Val Kilmar), and then a chick flick for me (Made of Honor with Patrick Dempsey).  We fell asleep together on the couch around 11:30pm and only woke up because our son in Florida called us at 12:04 to wish us a Happy New Year!  I don't think I've ever slept through the New Year before - I must be getting old!  We finished talking to him and then left to go pick up the kids from the stadium.  We arrived home sometime after 1am and went to bed.  It was a lovely day and the perfect way to end this detailed account of my life 41 days post-cystectomy!
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Day 40 Post Cystectomy

12/30/2019

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Well, I'm not going to say it was a great day, but I'm not going to say it was a bad one either.  I'm still going to consider it a good day, so good day #4!  I got up early and took a shower and washed and curled my hair, and then went to the dentist for a check up.  Everything looked good, so I was on my way in less than an hour.  I got home around the time Tim got home with the rental car (minivan), so we packed it up and loaded up 3 of our kids (Noah didn't want to go) and one of Nicole's friends, Abby, and took off for Atlanta.  Tim had heard about this Passion Conference in Atlanta a few weeks ago for people ages 18-25.  Well, our kids are 20 and 22, so it was perfect for them!  The only reason why it wasn't a great day for me is because I had very loose stools again.  I thought that was straightented out as I have been off the antibiotic for almost a week now, but I was still taking the probiotic but I think I missed taking it in the hustle and bustle of trying to get out of town, and my intestines let me know about it.  I ended up going #2 like 3 times today.  I had received a leg bag from Coloplast that I had planned on using for this trip, but it would have done me no good because I had to stop anyway for my bowels.  Ugh!  The trip itself was pretty uneventful (yay!), and I even drove part of the way, so that was good!  We pulled into our Airbnb around 9pm tonight, got unpacked, and I had some honey vanilla camomile tea, and went to bed.  Like I said, overall, a good day!
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Day 39 Post Cystectomy

12/29/2019

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It's a trifecta!  3 days in a row of feeling good!  I think I got the best night's sleep yet - woke up once when my husband had to get up and use the bathroom (he he he - that felt SO good to not have to join him!) but went right back to sleep!  Woke up around 8am - not bad at all!  I watched our church's 8:45am service online - it was so good.  Then I got up and did some things around the house, got ready, and then Tim and I left around noon to go meet with 3 other couples we have been meeting with once a month to provide care for each other.  It started out being a 3 hour meeting, but today was 4 1/2, and I was literally toast when we left there!  I couldn't wait to get home to take a nap, but we weren't going to get home until 5:45pm and we had a couple coming over at 6pm!  Yikes!  I told Tim was I was going to put some fan white noise on my phone, put in my earbuds, and sleep until I woke up - he would need to entertain until then (no problem for my extrovert husband!).  I ended up sleeping about 20 minutes and woke up feeling good, so I went ahead and got up and grabbed some of the dinner our friends brought - home made lasagna - I seriously think I dreamt of lasagna - it was SO good!  We had a nice visit, and they didn't stay long, so after they left Tim and I started packing.  He went to bed at around 10pm, which is when I wanted to, but I had restless leg, so got a few more things done, got in bed and started reading.  It was getting close to 11 and sleep was nowhere in sight, so I made some honey vanilla camomile tea, downed that, took some ibuprofen (no real reason - when I was having pain over the past few weeks there were a couple of times I took ibuprofen and laid down and woke up feeling amazing - I think I thought it might help my restless leg settle down) and read some more.  Finally about 11:30ish I think I turned out the light and was able to go to sleep.  So happy for another day of feeling good!!
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Day 38 Post Cystectomy

12/28/2019

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This was the 2nd straight day of feeling good!  Maybe I'm on a roll!  I still didn't sleep all that great - didn't get to sleep until arond 3:30am, but there's always nap time!  Tim and I met a couple for breakfast who were at an impass on some blended family issues.  Hopefully we were able to help.  We came home, and I cleaned my night bag and my stoma and then I had a friend come over around noon whom I hadn't seen in a while.  She had dealt with breast cancer a couple years ago but has been doing great, and it was great to see her!  We had a nice visit (a couple of hours), but then she left and I grabbed something to eat and took a nap!  When I got up it was time to get ready for a wedding we were going to.  It was an outdoor wedding and it was raining everywhere around the wedding place, but there was blue sky right above them.  It was a beautiful wedding and right after the last person in the wedding party walked up the aisle at the end of the ceremony it started sprinkling.  Thankfully, the reception was in a covered area, and they let us in right away (unlike last week's wedding where they made you wait an hour before you came in).  We sat with some good friends and really had a lovely time.  When the dancing started Tim and I got up and danced a couple of slow dances, and I felt pretty good about it!  Then they started speeding things up, so we sat down.  But when they did boot scooting boogie, I had to get up and do that one!  The wedding started at 5pm and by 8:30pm they still hadn't cut the cake or tossed the bouquet, so we pulled the "Jodie's tired and needs to rest routine' (which was actually very true), so we left and came home.  I putzed around a little but then went to bed.  So excited to have 2 straight days of feeling good!!
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Day 37 Post Cystectomy

12/27/2019

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I had a difficult time falling asleep last night.  I've had restless leg syndrome off and on for the past 10-20 years (can't remember exactly when it started) but it's never been all that bad.  But since my surgery I think that's been the main thing waking me up in the middle of the night now that I don't have to wake up to pee anymore.  Well, I couldn't even go to sleep last night because I had it pretty bad.  I started reading an ebook I got from my library by the wife of comedian Jim Gaffigan.  She ran into her own health challenge a couple years ago when they discovered she had a brain tumor the size of a pear!  Thankfully, they were able to operate and get it, and since then she wrote a book titled When Life Gives You Pears.  It's really good and helped me pass the time until my restless leg died down around 3am.  I only slept until 8:30am but I was wide awake after that, so I finally got up around 9.  My pee was super clear all day and I didn't feel any pain in my kidney today, so I was very happy about that!  

I started calling about my ConvaTec order around 11am and had to leave a message again.  I called again around 1pm and said I really needed to speak with someone as I'm trying to get this order in before the end of the year since I've met my deductible.  I was finally transferred to the lady handling my order, and man did she have an attitude.  I guess she was ticked off she had to work after Christmas or something, but she was not very pleasant to deal with.  The guy I had messaged with yesterday morning had said they would contact my doctor's office, but she said they hadn't done that yet because they needed to talk with me first.  Ugh!  So I asked if I could conference my doctor's office in so we could try to streamline this, but she said no because another department handles that.  So she confirmed what it was I was wanting to order and said they would try to contact my doctor's office.  Didn't sound very promising.  So as soon as we hung up I called my primary care's office.  The person I spoke with was super nice and helpful, and she said she would put in a request for the prescription and my doctor's nurse should be calling me back, if not today, then Monday.  Now we're getting somewhere (hopefully)!  I wish I had understood how all this works ahead of time - I could have started this process probably at least a week ago.  Oh well - live and learn.

My sister stopped by for a quick visit on her way home from visiting her daughter in Orlando.  We had some lunch and took a nice walk around the neighborhood (haven't done that in several days) and after she left I had one of my luxurious afternoon naps!  So great!  I thought I might sleep longer since I only had 5 1/2 hours sleep last night, but I slept the usual 45 minutes to an hour (somewhere around there) and woke up refreshed and ready to go!  It's funny because I used to take 5-10 minute power naps and that was totally enough.  I'm hoping I'll be able to get back to that some day, but for now I'm just thankful I have the freedom in my schedule to take long naps! 

​Our son invited some friends over tonight to watch the last episode of The Mandalorian, so I swept the floors and then I made pizzas and salad and we sat down to dinner around 6pm.  Then we watched the episode around 7pm, and then Tim and I watched a movie after that.  We have a wedding to go to tomorrow, and I had ordered the gift from Target so I told him I wanted to go pick it up tonight and not deal with all the crowds tomorrow.  So he graciously took me, and I was still feeling pretty good!  I told him so, and told him I'm feeling a little reticent to even say it because it seems as soon as I do I get a set back.  But I am feeling really happy about the way I've felt today!  It's almost 11:30pm and I'm just feeling really happy and hopeful - maybe I can start living a fairly normal life soon?  Emotions are so fickle - last night I was literally crying about how overwhelmed I felt about all of this, and today and especially tonight I'm feeling so encouraged and happy!  We'll see what tomorrow brings.  
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Day 36 Post Cystectomy

12/26/2019

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So I reluctantly called my doctor's office this morning around 9am.  I actually got to talk to someone instead of just leaving a message to wait for them not to call me back.  She said all the doctors were on vacation today and tomorrow, and then every doctor except mine (which I knew this) would be back on Monday.  I told her about the pain and the blood, but both had gotten a little better by this morning.  So I told her I wasn't sure exactly what to do about it except call them.  She recommended what I was already thinking - monitor it and if it gets worse let them know.  I then asked her about the script for ordering more supplies, and she said the lady that takes care of that in their office is also out until Monday.  So, it is what it is.  After I hung up with her I went to clean my stoma and accidently pulled one of the stents out pretty far and my stoma started bleeding.  Great.  It then seemed to be throbbing a bit.  We took my daughter to Target as part of one of her Christmas gifts to buy her some clothes, but I was moving super slow and experiencing pain, mainly around my stoma, and ended up sitting in a chair near the dressing rooms for most of the trip.  When we got home I grabbed some lunch, took some ibuprofen and then took a nap.  I felt much better when I woke up, and felt pretty good the rest of the day.  Plus my pee was clear and my kidney didn't hurt anymore, so all that was good! 

I had talked to ConvaTec about how to order supplies from their vendor, 180 Medical.  Before I took my nap I got on their website and started a chat with someone and they said all they needed was my name, date of birth, my health insurance info, the name of my doctor, and they would do the rest (get the script from my doctor and place the order for me).  That was pretty cool!  I asked if my primary care doctor could provide a script, and he said it is possible, so I gave him my primary care doctor's name as well.  He said one of their ostomy specialists would contact my primary care doctor first and try to get the script from them and if that was a problem they would contact my urologist.  He said they would contact me before they placed an order to make sure I agree with everything on the order and that I should be hearing from someone this afternoon!  

After my nap I got in the shower, and sure enough, that's when they called back.  I tried calling back when I was out of the shower but I just got a voicemail where I left a message and didn't hear back from anyone - ugh!  I really want to get this order placed before the end of the year since I've already met my deductible for the year!  So hopefully I'll be able to get this all taken care of tomorrow.  

I dried and curled my hair, and then Tim went to get in the shower to get ready.  I had washed my night bag earlier in the day and had hung it up in the shower to dry.  I asked Tim to wait to turn on the water so I could get my night bag out of there, but he started taking the bag out of the shower himself and the tip was hitting the side of the shower wall and I kind of over-reacted.  I know he felt scolded for trying to help me, but I am feeling a bit paranoid about the night bag since I'm suspicious that not cleaning it could have caused my UTI.  I found another place to hang it up and so we finished getting ready and then left to meet another couple who invited us to dinner at Bonefish Grill, which is where our daughter works. On the way there I apologized for overreacting and explained why I think I did, because I'm feeling a little paranoid about getting a UTI, and then I started crying.  I've been doing pretty good emotionally I think, but it just kind of overwhelmed me at the moment.  I don't want to be worrying about a UTI, I don't want to be cleaning my night bag every other day, I don't want to worry about my stents tearing at my stoma - it just seemed a bit overwhelming as I felt the weight of all the new things I have to do now.  It didn't last long, and it was probably good and healthy for me to mourn about all of this, but I didn't like feeling that way.  I played the 'thankful game' (as we call it) right after that and recounted a bunch of the things I have to be thankful for, which I know helped a lot!

Anyway, we arrived at Bonefsh and we were able to have our daughter as our server for the evening, and what a lovely time we had. Tim had snuck out sometime today and bought an amazing cake at a local bakery, had them write on it, 'Jodie is now cancer free!' and delivered it to Bonefish Grill so they could bring it out to us at the end of the meal!  What a sweet surprise!  It really did feel like a celebration, and I was thankful for the reminder once again of everything I have to be thankful for!  I came home exhausted and thought I'd go right to bed but ended up talking to my mom's cousin in California for almost an hour and then decided to do this blog post.  So now it is after midnight and definitely time to go to sleep.  Until tomorrow....

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Day 35 Post Cystectomy - Merry Christmas!

12/25/2019

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I'm still sleeping pretty well - loving that I don't have to get up multiple times in the middle of the night to pee!  I'm still always waking up, but I typically don't get up.  This morning I had no issues with unhooking the night bag, finally!  But I did still have blood in my urine for the first half of the day and my left kidney was killing me.  No!!!  Ain't nobody got time for this!  I took some ibuprofen at some point and that seemed to help.  We had a very leisurely morning - having a late breakfast of eggs and ham (not green eggs) and then the 6 of us sitting down to open gifts together.  It was really nice, but I'm just so bummed I'm back to not feeling well.  I know Sunday and Monday I remember thinking that it felt like I expected to feel as I recovered.  I almost felt normal again, and then yesterday and today I feel knocked down again!  Ugh!  But at least I had a very nice day with my family.  I took a nap right after lunch, and then Tim and I went to visit our best friends, the Perrella's, and take them some Christmas cookies I made last night.  We were there for about an hour, and then came home where I took another nap.  Tim made chicken and potatoes in the Instant Pot I got him - he was SO happy to get that!  So we ate that for dinner and then the kids joined us to watch one of our family's favorite movies - Lion King 1 1/2!  So funny!  After that my daughter and I watched a Sue Thomas episode.  Then it was putz around a bit, get ready for bed, and here I am.  I guess I need to call my doctor's office tomorrow about the pain and blood, plus I need to ask them about giving me a prescription so I can order more bags.  I'm not looking forward to contacting them only to have them not call me back, but I guess I don't have much of a choice.  Until tomorrow!
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Day 34 Post Cystectomy

12/24/2019

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 Did I mention that I'm and idget?  So this morning I got up with my night bag and the clamp firmly clamped in place, and the night bag had almost 2000 ml (or whatever that measurement is - it was basically almost full!).  I wanted to quickly empty it so I took it to the toilet and unclamped the clamp.  That is NOT the order I normally do.  I normally close the drain on my urostomy bag, unhook the night bag, and then empty it.  So about half way through draining it I decide I want to unhook it from the urostomy bag, so I closed the clamp on the night bag (why? no clue) and then unhooked the night bag from my urostomy bag.  Did you catch the step I forgot?  I forgot to close the drain on my urostomy bag, so thankfully I realized it pretty quickly and it only dribbled on the side of the toilet for the most part.  My goodness, will I ever get this system down pat?  Ugh!  

So then it was shower time and I had a very nice shower.  I think I may be to the point of giving the shower chair back - I mainly used it to put my legs on the seat while I was shaving them.  Well, I did sit on it at the end as I was rinsing my hair, but I probably could have done the whole shower without the chair, so I'll probably be returning it soon.  At least cleaning my stoma and my night bag after my shower went off without a hitch, but still took me forever - probably a good 30 minutes or more to do both of those things.  

I had my friend, Holly, who had helped me so much in the hospital come over for my birthday since she was so busy last week when it was my birthday, and she hung out with me and my family for about 3 hours - loved our visit!  As soon as she left, though, I laid down to take a nap - so nice! 

I received a phone call from ConvaTec to make sure I had received their free samples and to let me know who to order if/when I need to place an order.  They also said they have registered nurses available since I signed up for their Me+ program.  I had played phone tag with the nurses last week, and just didn't feel like dealing with this today so I told the guy I might call them later this week.  I also received my samples in the mail from Coloplast. Andrew, the guy I spoke with from there, asked me to call him after I received it, but with it being Christmas eve and Christmas day tomorrow, I'll just try him on Thursday.

Our next door neighbors had invited us over for Christmas Eve dinner at 2pm, and they had it that early so that Nicole could come since she had to work at 4pm.  It was SO yummy and they are so great to be around.  They have a 7 year old girl who is just precious, and the dad could be a stand up comedian - he had us all in stitches!  After we got home I was so tired I had to take another nap!  When I got up my oldest son and I wrapped Christmas gifts.  I sat on the floor wrapping gifts but I think that wasn't a good idea because my belly started hurting a bit.  When we finished Tim and I grabbed some dinner and sat down and watched It's A Wonderful Life!  Love that movie.  When that was over then I went in the kitchen and made these church window cookies I make every year.  It didn't seem like too much, but my belly was really hurting by the time I came to bed and when I went to empty my bag it had a lot of blood in it.  Boo hiss!  I just finished my antibiotic today so I really hope and pray I'm not getting another infection so soon!  I don't know how to describe the pain in my belly - it's not really a sharp pain - it just feels extra swollen and tender.  And once again my left kidney area is tender and sore.  Hopefully a good night's rest will cure whatever is wrong with all this.  We'll see!
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Day 33 Post Cystectomy

12/23/2019

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OK, I'm a complete idget!  Ugh!!  I woke up this morning and noticed that my urostomy bag wasn't draining into my night bag.  It obviously had earlier throughout the night because there was a good amount in there.  But it took me standing up and kind of shaking it before it would drain in the bag, so I thought that was kind of weird.  So I unhooked my night back from the side of the bed and walked with it into our bathroom to empty it.  When I unhooked it from it's little hook it immediately started draining (first on the floor before I had a chance to aim it over the toilet).  What in the world?  Oh - it seems that after I washed the bag yesterday I had left the drain spout unclamped so it could air dry.  Note to self - make sure you clamp that sucker before you hook up to it for the night!  It's a miracle it didn't just spread pee all over the place, but it didn't.  It did leak a little when I walked to the bathroom, but just a couple of spots that cleaned up pretty easily, along with the puddle on the tile floor in the bathroom before I was able to aim it over the toilet.  That could have been a whole lot worse than it was, but I still feel like a major goofball for forgetting the clamp the thing!  It reminds me of the time I think it was during the first week home that I hooked up to the night bag and forgot to open my urostomy bag drain.  I haven't done that again, so hopefully I won't forget to clamp the night bag drain again!  

I was going to change my bag tomorrow but just decided today was the day I should do it, and I tried a different method that I think I'm pretty happy with.  I set up all my supplies around the edge of my bathtub and then put about an inch of warm water in the bathtub so I wouldn't be sitting in a cold tub.  I eased myself into the tub and began taking off the old phlange.  It was stuck on there pretty good, so my skin was nice and red after I got the whole thing off.  I proceeded to use adhesive remover, and had to use 2 of them there was so much leftover adhesive on my belly.  I then let it just air out, and I was going to let the pee just run into the water because I didn't think there would be that much since I hadn't had anything to drink yet and it was like 9:30 in the morning.  But the pee was flowing just as much as when I've had a lot to drink before a bag change, who knows why?  So I put gauze underneath it to catch most of it while I was letting my belly air out.  I then used a prep wipe around the stoma to get ready for a new phlange and let that dry.  I then took the phlange and, instead of placing it in a perfect square I turned it however many degrees to make it a diamond and put it on that way.  I'm hoping that will help at least part of my skin recover from all that adhesive.  So that was a fun adventure (not really) that took about 30 minutes.  I'll be glad when it doesn't take me so long to do this stuff!

Tim and I had some leftover breakfast casserole, and then we went to Target to do some Christmas shopping.  Nothing like waiting until the last minute!  We were there for about an hour and then I came home and heated up some leftover pot pie for a friend who was coming over for lunch.  We had a great visit - about 3 hours - and after she left I took a nap!  Loving these naps.  After I got up I putzed around the house a bit and then got all the ingredients together to make scalloped potatoes!  Tim picked up a Honey Baked Ham with a gift card a friend had given us - it was a $50 gift card and the total came to $81 - are you kidding???!!! - I think that's nuts!  Plus, Tim had ordered it ahead but still had to wait in line behind 85 other people for about an hour before he could get our ham.  Wow!  Anyway, I laid down again while the scalloped potatoes were baking and didn't get up until the timer went off about an hour later!  We all sat down to a wonderful dinner of sweet kale salad, scalloped potatoes, and Honey Baked Ham!  Then our oldest son played a couple games of Rummikub with us, and then Tim and I and he watched episode 7 of The Mandalorian.  Now we have to wait until Friday for the final episode of the season.  Tim was so tired he went to bed, and I've just been putzing since then.  But it's 1am so I think I'm going to go to bed, with my clamp firmly clamped on my night bag, thank you very much!
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Day 32 Post Cystectomy

12/22/2019

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Once again, I wanted to have Sunday brunch with everyone.  The last time I said this was the Sunday after Thanksgiving and I couldn't really do much towards the brunch since I had just gotten home from the hospital a few days before, so Tim did pretty much all the work for that!  Well this time I went to the grocery store and got all the ingredients and came home and whipped up a breakfast casserole, shoved it in the oven, rested, and then it was ready and we all sat down to a wonderful brunch together, and I made it all by myself!  
I pretty much rested for most of the day after that, but I knew I wanted to get a shower and I wanted to clean my stoma, but I wasn't feeling very motivated.  My daughter was evidently in the same boat (except for the stoma part), so we encouraged each other to get a shower, and she was right, I did feel better after that!  I also cleaned my night bag, but man that is such a pain!  It takes at least 20 minutes, mainly because I'm still in super slow-mode.  Anyway, after all that, Tim and I had more leftovers for dinner, and then we hosted our Life Group whom we hadn't seen in over a month!  It was great to be with them - we just share what's going on in our lives and pray for each other - it's always a sweet time!  They left around 10pm-ish and Tim and I were pretty tired so we went to bed.
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