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Happy 3 year anniversary!!!

11/21/2022

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It's hard to believe it has been 3 years since my cystectomy, but 3 years ago today I underwent that life changing surgery. I've learned SO much since then, and even since the last time I journaled on this Cystectomy Journey blog. January 1, 2020.  Little did I know then that Covid-19 would be happening when I entitled my last blog entry Happy New Year!  Just when I was recovered enough to go shopping for a new wardrobe, all the stores shut down!  But the Lord provided, and 2 dear friends (who didn't even know I was struggling with my wardrobe since my surgery) just happened to feel led to give me clothes, which turned out to be enough to completely replace all the clothes in my closet!  And they were the type of clothes I needed like long flowy tops that hide my bag.  I remembered thinking a couple of months ago that I wanted to update this blog on my 3rd anniversary, and I have SO much to say, but really not enough time to say it (it would take forever!).  I think I will start with a few key tips I have learned since my last entry, and then what I think has been my biggest and best lesson.  First, the tips:
  • Get a shower chair to use in the shower until you are strong enough to shower without it.
  • Have your doctor remove the stints from your stoma a few weeks after your surgery (unlike me).
  • Have your doctor (either primary care or urologist) write a prescription for your ostomy supplies.  I highly recommend Coloplast skin barriers (aka phlanges, aka bases) and pouches! 
  • I use Coloplast SenSura Mio item 10504 for my barrier, and Coloplast SenSura Mio Urostomy Pouch Transparent item 11492 for my pouch.  Here are some reasons why I like Coloplast over other urostomy makers:
    • Doesn't pancake at night.
    • Never leaks.
    • ​Draining doesn't require anything to wipe it - it drains with no extra drips
    • Seems to have a flatter profile than other brands.
    • Has air pockets it keep it flatter - other brands would turn into a big, obvious protruding ball.
    • Uses less stomach real estate (LOVE THAT!)
    • Doesn't irritate the skin - like EVER!
    • It doesn't have a valve that you have to remember to open or close.
    • Removing the bag for cleaning seems easier with the connect tab.
    • Doesn't seem to sound so crinkly (my husband used to call it my potato chip bag I was hiding because the other brands I tried were so crinkly).
  • Clean your stoma and urostomy bag in the shower on days you are not changing your bag (just don't run water over your stoma so as not to meddle with the substance around your stoma protecting your skin).
  • Get samples from Coloplast, including a leg bag if they’ll send one to you (they did me - it's great for long car trips to eliminate extra bathroom breaks!).
  • Get a night jug from Convatec for at home use: The Convatec Night Drainage Container Set (27060) 
  • Get a night bag from Coloplast to use when traveling via air or any time you need to pack light:  Coloplast Night Drainage Bag Assura® 2000 mL A4357
  • Seatbelt - didn't wear it at first - doctor said he could repair if damaged but not the rest of me if not wearing - probably should have gotten a small pillow - maybe not - just held the lapbelt part of the seatbelt away from my stoma.
 
Streamlined changing my bag:
  • Once a week I remove the bag from my skin in the shower and maybe use an adhesive remover once a month (using an adhesive remover more often seemed to irritate my skin) and then wash with bar soap and rinse.
  • After my shower, I cover my stoma with a stoma cup (and I put a folded piece of paper towel in the cup to absorb the urine for the short time the stoma cup is on) and attach it around my waste with an elastic urostomy belt.
  • I snap the base and the urostomy bag together and click the connect tab to secure it and put the plug in the drain and place the base under my arm to heat the base a little.
  • I take the stoma cup off while leaning over the sink and use a sterile gauze pad to wipe the surface area around the stoma where the base will go to ensure it is completely dry.
  • I peel the plastic piece off the base, and then place the base with the urostomy bag attached around the stoma and lean back to make my stomach flatter and press firmly in place.

My biggest and best lesson:
  • I have learned that life is truly a gift from God not to be squandered or taken advantage of.  I have learned to be thankful for the little things I used to take for granted every day:
    • ​The sunshine on my face.
    • Clothes that fit.
    • The ability to walk.
    • The ability to take care of myself.
    • The love of my family and friends.
    • Food (after not eating or drinking a whole week in the hospital!)!
    • Showers.
    • Swimming.
    • Working out.
    • Dancing.
    • Driving.
    • I could keep going, but most importantly, the love and care of my heavenly Father.  If you don't know Him, I invite you to ask Him to come into your heart and go to a Bible believing church to ask them to join you on your journey with Him!


​
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Happy New Year!!!!

1/1/2020

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I am SO hoping this blog will help someone who is going to need a cystectomy!  I really thought I was prepared for what I was going to be going through, but I definitely was not!  I would recommend going back to the first entry in this blog and reading the whole thing at some point to get the full picture.  But for this day, I'm going to list out everything I can think of that happened to me that I wish I had known about, be it just information or practical advise.  I'm sure not everyone has the same experience I had, but if you do experience anything of what I did I think it will help you to hear about it before hand!  So here we go:
  • After surgery I had an ng tube in my nose - had no idea I was going to have it.  I think I had it for about 24 hours, and thankfully I was out of it for most of that time, but still, would have liked to have known about that  ahead of time.
  • I was told I would have 4 holes for 4 robotic arms in my stomach, but I think I really had more like 6 holes.
  • One of the holes on my right side was used for my stoma to stick out of my stomach.
  • Another of the holes was used for a JP Drain (I would recommend looking that up and reading my entries on that because I had never even heard of it before my surgery and had no idea I was going to have it)!
  • The hole was bigger than the JP Drain tube, so I was also leaking fluids out of the hole around the JP Drain.  After the nurses spent every hour or 2 changing guaze around the opening for a whole week, my doctor came up with the brilliant idea of putting a urostomy bag on the site so it could easily drain into that and be easily emptied (check out my entry on that on November 28).
  • I was also draining like a waterfall from my vagina - especially every time I got up.  They gave me pads in the hospital for that, but I discovered adult diapers were WAY more effective! 
  • They tried to give me something to eat the day after my surgery if I remember right, but I just couldn't eat.  I wasn't progressing as I should have been (I honestly don't know what the indicators were) so then I was on NPO (basically, nothing by mouth) for the 5 days after my surgery while they tried to figure out what was wrong with me.
  • When you are on NPO, you can have your mouth swabbed with a sponge dipped in water, and maybe some ice chips, but that's it.
  • I noticed my upper left thigh was numb.  My doctor said he remembered moving that nerve to the side so it definitely wasn't cut and he believed I would get the feeling back, but now 6 weeks later I think it's just as numb as it was, so me thinks the feeling won't be coming back.  Not a huge deal, but would have liked to have known that was a possibility.
  • It was finally discovered that the end of one of my ureters necrosed (died), and that was why I wasn't progressing as I should.  My doctor explained that your ureters get their blood supply from the kidneys and the bladder, so when your bladder is removed the kidneys need to step up and supply all the blood to the ureters.  He said normally it is not a problem, and he had never seen this happen before, but obviously my one kidney didn't supply enough for the ureter that was connected to it, so he had to go back in (this time cut me open) and remove the necrosed part of the ureter and reconnect the rest of the ureter to my stoma.  This sounds like a rare thing that probably won't happne to you, but it did to me so I'm putting it in here.
  • You will have 2 stents coming out of your stoma about 2 inches long that some doctors remove a week or so after your surgery, but my doctor evidently allows them to just fall out eventually.  Mine have been slowly coming out a little at a time so I clip them when they get too long, but it's been 6 weeks and I still have them.  When one started coming out a week or so after I got out of the hospital I freaked out thinking it shouldn't be doing that - would have been great to know this was normal.  Wish I knew how long they will be around.  I'll update this bullet point when I know.
  • At my follow up visit a week after I got out of the hospital, my doctor removed my JP drain and put a bandaid on the hole.  I subsequently developed shoulder pain whenever I was verticle that lasted about 24 hours.  My home health nurse said it was due to our bodies normally being in a state of negative pressure, and when an open hole in our body is closed it takes awhile for our bodies to regulate the pressure and shoulder pain can exist until we are regulated.  Another side effect that I think was related to the JP drain removal and negative pressure was that my waterfall that had still been coming out of my vagina 2 weeks after surgery completely stopped right after the JP Drain was removed that day.  Bye bye diapers!
  • I highly recommend staying on a stool softener for about a week to 10 days after surgery, and then switching to a good probiotic after that.  That seemed to work great for me!
  • I didn't know ahead of time that I would have a home health nurse coming to my house regularly after I got out of the hospital to help instruct me on how to change my urostomy bag.  Had I known I would have researched ahead of time what Home Health Care companies are in my area and covered by my insurance and which have the best ratings.
  • CLOTHES!  This is a really big deal!!  Get some smock type dresses on hand (at least 5), especially if you are relatively thin, because if you wore form fitting clothes before, they WILL NOT WORK!  I'm 6 weeks post surgery and my belly still is a little swollen and my stoma sticks out a least an inch.  Even hip hugger pants still feel tight to me, so the only thing comfortable at this point is a dress.
  • If you use a night bag (which I highly recommend), clean it every day and then get a new one twice a month (had I known that I think I wouldn't have gotten a UTI a month after my surgery).
  • The way I clean my night bag is as follows (this may be overkill, but after having a UTI, I would rather err on the side of overkill!):
    • I take a funnel I ordered off of Amazon (https://www.amazon.com/Ajax-Scientific-Polypropylene-Funnel-Diameter/dp/B00EPQ466O/) and I insert it in the top of the tube of the night bag that connects to my urostomy bag and I put 2 pumps of hand soap in the funnel and chase it with about 2 cups of warm (not hot) water in the funnel and let it pour into the night bag.
    • I swish it around a bit (not too vigorously as you don't want it to get too soapy) and then drain it.
    • I then pour about 2 cups of cool water into the funnel into the night bag and swish that around and drain it.
    • I then take about 2 cups of a vinegar solution (1 part vinegar to 2 parts water - it doesn't have to be exact) and pour that down the funnel into the night bag.
    • I swish that around and then let that sit for about 30 minutes and then drain it.
    • I then take another approximately 2 cups of warm water and pour that down the funnel into the night bag.
    • I swish that around and then drain it.
    • I hang the tube attached to the bag in my shower with the bag drain unclamped to let it dry out as best as it can (the bag will still have wet spots in it).
    • Before I connect my urostomy bag to my night bag I take an alcohol wipe and clean 3 things - the drain of the night bag, the top of the tube that connects to my urostomy bag, and the drain on my urostomy bag.
  • When you connect to your night bag, make sure you have opened the drain of your urostomy bag and that you have clamped the drain of your night bag (have made both of those mistakes more than once!).
  • Before you disconnect your night bag in the morning, make sure you close the drain of your urostomy bag (I know these are common sense instructions, but it is easy to not remember these little details when you are recovering from surgery and anesthesia!).
  • If you think you are going to get a lot accomplished while you are in bed recovering (whether it be reading or catching up on TV shows or just watching movies), don't be surprised if you just don't have the desire to do anything but sit and stare.  It's OK. 
  • When my Home Health Nurse came the first time (2 days after I came home from the hospital only after I called multiple times to make sure someone was coming) she changed my bag, had me sign a bunch of paperwork and then ordered supplies for me for the month.  I had no say in it (wouldn't have known what to say anyway), and she ordered urostomy bags from one company (Hollister) and base pieces (also called phalanges) from another company (ConvaTec).  If I had that to do over again and knew about it ahead of time I would have requested all ConvaTec supplies.
  • If you're not happy with your Home Health Nurse, call the director and ask for someone else (which is what I did - so glad I did!).
  • If people offer to bring meals, say yes!!  Have a friend set up a meal train if possible.  A great site for that is takethemameal.com!  Then write a thank you note to each person who brings a meal.
  • Ask someone in your family to document who sent you flowers in the hospital or to your home and write them thank you notes.
  • If people ask if there is anything else they can do for you, I recommend either mowing the lawn or cleaning the floors in your house and maybe dusting.  
  • Make sure you have a shower chair when you get home from the hospital!!!
  • I thought I could do an outing a day starting 3 weeks after my surgery - I should have only done 1 outing every other day for at least the first week of getting out.  A friend told me that whatever I think I feel good enough to do I should cut it in half, and that's what I should have done.  One outing every other day would have been smart.  
  • I recommend cleaning your stoma every day or every other day by first washing your hands and then leaning over the sink, removing the pouch, taking gauze and gently wiping the goo off, and then replacing the bag.  It's simpler than trying to do it sitting down and trying to keep the pee from getting everywhere.
  • I have read some people completely change their bags and bases every day or even twice a week.  I've been doing once a week and that has been working very well.
  • My favorite way so far to change my base and bag is as follows:
    • After a shower, I sit in my bathtub with all my supplies around me on the side of the tub. 
    • I place gauze on my right leg to catch the pee and set to work removing the base with the bag still attached (see no need in taking an unnecessary extra step by removing the bag separately). 
    • I use my left hand to push down on my skin while my right had pulls up on the base until it is free from my skin. 
    • I then take adhesive remover and get all the adhesive off of my skin. 
    • I sit there for about 5 minutes and just let my skin air out. 
    • I then take a skin prep pad and rub it on the skin where the new base will go. 
    • I give that about a minute to dry, and then I take the new base and remove the circle piece that protects the circle and thread my stents and stoma through the hole and then press it firmly down on my skin. 
    • I then remove the rest of the things and press the rest of the base firmly on my skin, holding it down for about 30 seconds to let the warmth of my hand cause it to bond with my skin.
    • I then connect the new bag to the base, and I'm done!
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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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