Wednesday December 28

Christmas Eve was a good day.  I woke up, took my meds and showered.   I got dressed, ate my breakfast and got ready for the day.   

Around lunchtime my friend Kelly came to visit.   We talk at least oncea week but it's nopthing like seeing someone in person.   I really miss her.   My friend Linda also stopped for a visit.   I haven't seen her in over 15 years.   It was great seeing her and so nice to catch up.   

After they left, Amber came to the house with a gift basket from Finding Sofie.   They are the group who found a foster home for us for Wyatt and Lilly.   The outpouring of support and generosity from this group is overwhelming!   The gift basket was full of gifts including gift cards, candles, coloring books, coffee mugs, bath stuff & lotions, hats and so much more!!  Thank you to everyone who contributed to the basket.  It was extremely thoughtful and I am grateful to have been in your thoughts and prayers.   

 

Just a couple of pictures with items from the basket.  

When  I was done, Amber took me over to Cyndee's for her big Christmas party.  I got there and helped her set up.   It was catered food so there really wasn't much of anything to do.  People started arriving and I got settled in the chair.  It was great seeing everyone and being able to take part in the festivities.   For dinner we had a pasta bar.   It was delicious!!   I had some spaghetti and alfredo with meatballs and a breadstick.  I also had some cheese and sweet bologna.  For dessert I had a piece of raspberry cheesecake.   Also delicious!!!   And you can't forget about the wassel!!!   

After dinner it was game time!!!   First the kids - they had piñata fun!    We are lucky so far that no one has been injured.  There have been a few close calls but nothing serious yet.

 

 

 

 

 

 

They had a blast and each filled up a bucket full of candy.   Leave it to Mamaw to load the kiddos up with sugar 😀.

Next was the adults turn.  The first game was a quotes game where you had to write down the name of the movie to match the quote.   The second game was timed and whoever got done first won.   It was a game where you had to unscramble the words.   The third game was a gift card game.   Everyone picked a number and then picked a bag one at a time.   Each bag had a different gift card.   When it was your turn, you could either steal a different gift card that someone already picked or you could keep the one you chose.   It's a really fun game and gets everyone involved.   I got a Gap gift card and Colin got a Cabelas one.  

After the games, we did a gift exchange.  I got the most comfortable pj pants ever along with a really nice, soft sweater.  I was extremely happy with my gifts.   Everyone knows how much I love my pjs.   If I'm at home, that's all I wear!   Aunt Kim gave me a Sunshine box to open, but she had to leave before I opened it so I put it with my stuff to take back to my parent's.  Everyone started to leave so I called my Mom to come and pick me up.   She picked me up and we decided to drive around and look at Christmas lights.  It's amazing what some people do!!!  

We got back to the house around 11.  I put on my pjs and we sat in the kitchen.  I made us some hot chocolate with marshmallows and opened my gifts inside the sunshine box.  It had so much stuff!!!   There is a tumbler mug that you color, coloring book, pencils, candle, notepad, a grow your own herbs kit, chapstick, socks and so much more.  After I opened everything I stayed up and helped Mom wrap the last of the Christmas presents.  We were up until about 1:30am and then finally went to bed.  It was really nice just being able to spend some one on one time with Mom and to catch up.

Merry Christmas!!!!   I slept in a little longer than I had wanted to.  I got up and moving around 9:30.  I organized my piles of presents so that they were out of the way.  I got dressed and ready to go to Amber's.   I wanted to see what the boys got and spend some time with them before everyone got there and the craziness began.  Mom and Dad came along.   We headed to Amber's around 11.  

We got to Amber's and I got comfortable in a chair.   The boys were so excited.   They got a PlayStation for Christmas!   They played on it about 10 minutes and showed us the rest of their presents.  After about 45 minutes of us getting there everyone started to arrive.   We sat down and had dinner at noon.   It was delicious!   Ham, green beans, corn, potatoes and dinner rolls.  

After dinner we exchanged gifts.  Mom and Dad got the twins nerf guns.   Not just any Nerf guns but the assault rile kind.   The guns are as big as they are.  They had a blast with them once they used how to them.  Dana and Steve got me a beautiful owl necklace.  It is gold with crystals.  Very pretty!!  I also got a pretty sweater from my parents and a Victoria's Secret gift card.  Amber got be a beautiful Ali and Ani bracelet.   It is Silver with an arrow.  I love it.  After the  gift exchange we hung out for a little bit then we went home.   Here are some pictures from the day.   

 

 

 

 

 

 

 

 

 

 

 

 

 

We went home and I got comfy.  I haven't seen Mehgan or met Elliot at all yet so we made plans for her to come over.   She came over with her mom Susie.  Susie sends me cards on a regular basis.  I really enjoyed getting them.  They always make my day a  little brighter.  It was so nice to see them and  catch up.   The baby is beautiful.   She looks just like Mehgan. I creally miss my best friend.   I told myself I wouldn't cry but when she said goodbye and was leaving we both cried.  Hopefully I will see her more frequently. Love you guys!!

After they left Mom dropped me off at Cyndee'sbj.  It's Colin's birthday so I wanted to see him.  He was in the: den watching tv so I joined him.  Cyndee had just got e up from a nap.  Quinn and Phenix came over with Ireland.  I haven't seen them in forever!!  Ireland's was scared of my mask, I tried to hold her and she was pulling it off.  It was really cute.  We hung out in the den for a little bit and then went to the kitchen to eat dinner: 

We all sat around the island and ate the leftovers from Olive Garden.  Cyndee got enough food to feed an army.   We ate and then sang Happy Birthday to Colin. It was a little gathering but nice!  After the cake, Colin took me back to my Parent's house.   I went straight to the bedroom and put on my pjs.   I hung out for a little bit and then got some company.   Lisa and Fran stopped over to say hello.  Lisa is our next door neighbor and Fran is her mom.  They didn't stay long at all but it was nice seeing them.  They gave me a nice little gift basket with a gift card, a book, an angel pin and a couple other things.   After they left I relaxed in the chair.   I was exhausted from the day so I went into the bedroom and layed down.   Christmas was officially over but I got the greatest gift of all. I was able to spend the day with everyone I love!!  Sweet dreams and I'll update later.   Merry Christmas!!!

 

 

 

Friday December 23

I know I haven't posted in a while.   I've been on an emotional rollercoaster of highs and lows.  

To start things off....I misunderstood the doctor.   There is not a fracture in my tailbone, it's actually in my spine.   It's at the very lowest point right next to the tailbone.  Because of where the fracture is located, there was a spinal surgeon consulted.   He met with me and told me that at this point surgery is not warranted but it's going to take 6-10 weeks to heal.  I'm in so much pain it's ridiculous!!   I was fittted for a walker and told to use it as needed.  It has actually been extremely helpful.  

You are probably wondering how the second chemo treatment went.   It was exhausting but went well.  I didn't have a reaction to it while it was being given.  The following day wasn't too bad but the day after that was terrible!!!   I was in a lot of pain and felt like I was hit by a truck!   Every bone/muscle in my body hurt.   It was so uncomfortable and tiring.  I also had the back pain and discomfort on top of that.   As far as the transplant goes, everything is perfect!!!   The organ is    

working like it should and there are no signs of rejection.   

In the days to follow I was just in too much pain to do anything.   It was a task to go to the bathroom.  It was not a pleasant couple of days.  Things were running through my head.  I would sit and cry for a whole day straight and then the next day be fine.  I've been going through all of the emotions.   I've been angry and have said some hurtful things to the ones I love.   I have wallowed in my self pity and thought why is this happening to me.   I have been grateful that I am alive and have been given another chance.  I have been happy.   I am happy because I have all of you supporting me and lifting my spirits.   The outpouring of cards and gifts has been overwhelming.   The donations and gift cards are unnecessary but greatly appreciated.   We will definitely put them to good use.  

There have been so many cards and packages delivered to the apartment I can't keep track!!!   I will post some pictures at the end of this.   Thank you to everyone who sent something.  I have received hats, coloring books, gift cards and so much more. People I don't even know are sending me stuff.   It is truly heartfelt and overwhelming.   The generosity, thoughtfulness and support has been baffling.   Emma and Kelly made beautiful head wraps and put a lot of thought into the patterns.

You are probably wondering what's going on now.  I was discharged from the hospital on Wednesday Dec 21.   The theory was that I'm going to be in pain whether I'm in the hospital or at home so I might as well be in the comforts of my own home.  Getting there was a different story.   The car ride was ok.   We got to the apartment and I used the walker to get from

the car to the dreaded steps.  

The steps were not an easy task.  It was extremely daunting but I made it!!!   Colin had to pick my legs up and move them one at a time so I could pull my body weight up as well.  We finally got into the apartment and were able to unwind.  Colin got my meds out and started laying them out for the week.  There were prescriptions called in to Target so he got me settled and left to go get them.  He brought back food when he came back so we didn't have to cook.  We Ate and headed to bed for the evening.

Thursday morning, we got up.   I got showered and dressed.   Colin loaded up the car and we headed to Lancaster!!   Getting down the steps from the apartment was easier than going up them.   Colin had me all set up for the car ride.   Pillows and blankets strategically placed so that I would be comfortable.  

The car ride was uneventful.   We stopped once so I could use the restroom.  We arrived in Lancaster around 1.   I unloaded all my medical supplies and my suitcase.   After sitting and chatting with my mom for a little bit I was hungry so we called Smith's Hotel and ordered a chicken cheesesteak.   We went and picked it up and headed back home.   

Amanda and Sofia came over for a visit.   They hung out for a couple of hours.  We just sat and chatted.  She had to leave to relieve her mom who was watching the

twins.   After she left,  Bobby brought Carter and Caden down to see me.  They stayed about an hour

But had a doctor's appointment and had to leave.   After they left Mom took me to the groceey store to get some things.  We went to Giant because a very generous family sent us gift cards.   After the store we went home.   We had potato and eggs for dinner (one of my favorites!).  After dinner Amber and Bobby came back with twins and Shawn came over.  We just hung out for a little bit.  Amber and Bobby brought this huge gift basket in.   Some of the employees at Amber's work donated items and made a beautiful gift basket.  I was completely overwhelmed with the generosity.  The gift basket had gift cards, bath stuff, coloring books, pens and pencils, head wraps, candles and so much more!!!   The outpouring of kindness and support is mind boggling!!   

 

 

The boys helped me open the gift basket for a little bit but bailed.   They left after a while and I took my meds and went to bed.  

Friday morning I woke up and did all my medicines.   Amber came over to hang out with me.   I talked her into taking me to Dollar Tree.   I wanted to get a couple of cards.  She bought a couple of things too.   We went right home after.  Amber and Bobby had a bunch of last minute errands to run so they left the boys at mom's.   we ordered Chinese for lunch.  

My friend Marlena (the beautiful woman who shaved her head to support me!) came over for a visit and had lunch with us.   She brought so many cards from the Litiz after school program.  The cards are adorable!  

 

It was a nice visit and was great catching up.  She left and Tom (Colin's dad) stopped in.   He stayed for

a little bit and we caught up.   The twins were playing upstairs and were quiet as mice.  They were laying in bed playing a game on their ipad.  Amber and Bobby came back and took the twins home.  Dana stopped by when she was done with work.   She hung out for

a little bit.  We had leftovers for dinner.   I put on my pajamas and went to bed.  

It was nice to see everyone.   Tomorrow is Christmas Eve!!!   I can't wait!  Here are some pictures of the packages and beautiful gifts.

 

 

 

 

 

 Tomorrow is Christmas Eve!!  Have a good night!!!  

 

Wednesday December 14

I know it has been a while since I've updated and I'm really sorry.   I've had a bad couple of days.  My second round of chemo was supposed to be on Friday the 9th.

Shawn and Courtney were sleeping when Colin and I got ready to head to the hospital on Friday.   Originally we were told that we should be there at 7 but to wait for a call from admissions to make sure they had a bed.  We didn't get a call so we went to IHOP for breakfast.  We sat down and had a nice and relaxing breakfast.  After we ate we called my transplant coordinator.   By that time I was in so much pain and couldn't walk.   Jen told us to go to the er.   She said it would expedite things.  So we were taken to a room in the er and waited.   Shawn and Courtney met us there and hung out.   

Unfortunately they were unable to get me a bed early enough to do it.   We weren't admitted until close to 4 pm.  Once we got to the 11th floor we got settled.  We played cards and hung out.  Everyone left and I went to bed.  

Colin came in early Saturday and Shawn and Courtney came in to the hospital.  They were eager to head home.  I'm glad they came for a visit.   It was a nice break and we had fun going to dinner, looking at their engagement photos and just spending time together.

They ended up doing the CHOP on Saturday.  I did fine through the process.  They started it around 2 in the afternoon.  We weren't done til after midnight.   Colin slept in the chair by my side.   He got up around 2am and went home.  He was back by 7:30 Sunday morning.   

I was dealing with a lot of abdominal and back pain.  The more I moved the more it hurt.  Getting to the bathroom is excruciating and takes me a while.  I am trying to be as positive as possible but it has been a little difficult.   Sunday was uneventful.  They scheduled me for  an MRI on Monday.

I had the MRI.   When I've had them in the past they put you in the tube and it takes about an hour.  This one they did three different one.   One in feet first.   I was in for an hour.  The second they had me feet first with my knees bent.   That was about 40 mins.   Then they moved me to a different bed and put me in head first.   It was an extremely long test and very painful.  When I finally got back to my room I could hardly move.   I spent the rest of the day in bed.  

Tuesday I was in a lot of pain.  I didn't do much.   Just hung out in my room.   The doctors didn't really have anything to say.   We were still waiting for the MRI results.  I spent the day watching Shameless.   I'm hooked on it.  

Wednesday- Bill came in to my room around 6.  He beat Colin in.   He got the results of the MRI.   I have a small hairline fracture in my tailbone.  There's really nothing they can do for it.   I have to take it easy so I don't aggrevate it and make the pain worse.  On top of all of that I feel like I've been hit by a truck from the chemo.   My whole body aches.   Bill stopped in my room in the afternoon to check on me.  He said not to overdo it and he will see me in the morning.  

I spent the evening crying.  I am so exhausted and tired of being in pain.   I'm watching Shameless and nodding off.   Hopefully tomorrow is a better day.   I will try to post more frequently.  Goodnight.  

Thursday December 8

Yesterday was Wednesday.  I had a pretty uneventful day.  I woke up, got showered and dressed.   I layed down for a little bit.   I put a ham in the crock pot for dinner and got out everything that I needed to make it.  

Colin and I layed on the couch and watched a movie.  We watched Neighbors 2.   It was funny, not as good as the first one.   We had lunch while we watched the movie.  We also watched Bad Moms.   I went to the theater with Kelly to see it when she was here visiting a couple months ago and we laughed our butts off the entire time. 

After the movie Colin had to run to Target and pick up a couple more prescriptions.  I decided to go with him and get my walk in for the day.  The steps to the apartment are the worst.   I made it down them slowly but surely.  We got to target and I got in the motorized scooter.  We picked up the prescriptions, got the mail and headed back to the apartment.   I tackled the steps slowly and made it up.   It took everything out of me.  I finished getting dinner ready and we sat down and ate.   We had brown sugar pineapple ham, mashed potatoes, mixed vegetables and baked beans.   It was really good.   Colin cleaned up the dishes and the dinner mess and I took my meds and layed down.

Thursday was an ok day.   We layed around most of the day.  I packed my hospital bag for my chemo stay.  We layed around most of the day.   Colin left and ran a bunch of errands .  I showered and got dressed while he was gone.   Shawn and Courtney came to visit!!!   They got to the house around 4.   We were all hungry so we went to one of the restaurants across the street Bar Louie, where they serve bar type food and American cuisine.  Dinner was good.   I had pork tacos but pulled everything out of the shell and just kind of had a taco salad.  Everyone enjoyed their dinner.   We stopped at Rocket Fizz on the was back and bought candy.  We went back to the apartment.  I put on my pjs and hung out for a little bit.  Shawn said they were going to go out for a little so I gave them their goodnight hugs and went to bed.   They left and I went to bed.  

Tuesday December 6

Yesterday was a traumatic day for me.   (Tuesday)

The morning was good.  I showered in my shower.   Nice, hot, shower unlike the ones I was getting in the hospital.   It felt so good.  After my shower, Mom and I went to IHOP for breakfast.   I had their campfire got chocolate, which was delicious!   I also got the crepe combo.   A strawberry crepe, eggs, bacon and home fries.   My eyes are always much bigger than my stomach!   I ate the crepe and got a to go box for the rest.  

Here is where the trama started.   We went to great Clips next to IHOP so I could get my head shaved.  I was going to have Colin do it when he got home but I thought it would be harder for him and me if he was the one doing it.  We walked in and put my name on the list.   The girl took me back right away and I explained my situation to her.  I told her I was probably going to cry.  She was so sweet and started crying too.  She put the cape on me and started shaving my head.   

 

Before pics.   

 

It started coming out in clumps in the shower.

 

Here is her shaving my head

 

 

 

 

I only cried at first.   It was a sense of relief when it was done and over with.   The hairdresser didn't charge me for my haircut and said it was her Christmas present to me and asked that I keep her updated.   I wrote down my blog and email info so she could stay in touch.   I put on my handmade crocheted hat that someone from Josh and Alesha's church made.  It fit perfectly and kept my head warm.    

Mom and I left Great Clips and went to Dollar Tree.  I needed some disposable pans and had to grab a couple of cards.  I hit the jackpot at Dollar Tree.   They had a bunch of hats and gloves.  I got 5 hats there.  They are winter hats but are really cute and the best thing is that they were only a dollar!!!   We ran and did that and went back to the apartment.  We heated up lunch and ate.   Mom left around 1.  Colin called around 11 and said he'd be home around 4/4:30.  I took my 2:00 meds and then layed down for a nap.  I slept for about an hour.  Colin got home and unpacked etc.  He said I look good bald and it fits me.  Not sure if he's just saying it to be nice but 

  We ordered dinner from a new pizza place we hadn't gone to before.  I ordered the food around 4:30.  They said 45 mins to a half hour.  We still hadn't gotten our food around 6.  I called to follow up and was told they were on their way.  Still no food at 6:30..... finallly around 6:45, the food showed up.  So disappointing.   Everything was cold.   Colin ordered a Greek salad and ended up with a gyro salad.  I ordered the appetizer sampler and it was so cold that the chicken fingers couldn't be torn up with my fingers.   I had to microwave everything.   Colin also ordered a chicken parm sub.   Freezing cold and not what the description said at all.  The menu said it was breaded chicken etc and what he got was shredded, pulled chicken.  I called and asked to speak to a manager.  The girl who answered the phone apologized and said they got freally busy and that's why the food was late and cold.   She said there wasn't a manager to speak with.  After she said that she said "is there anything else I can do for you? I don't really have anything to say".   Worst customer service ever.   I told her it was our first and last time ordering from them and the whole situation was handled terribly.   I got off the phone and was just super annoyed with everything.

I got ready for bed and then layed down.  He got ready as well and we layed down.  That was my day in a nutshell.  I will post more tomorrow.   

Monday December 5

Had an ok night last night.  I actually slept a little bit.  The doctors made their rounds.   There are a couple of replacements I need via iv and then we were free to go!!!  

The replacements took about 6 hours.  I wasn't done with them until around 1:30.  Until they got all the discharge paperwork etc done we didn't get discharged until close to 4.   

We left the hospital and stopped at the grocery store on our way home.  I sat in a motorized scooter to get a couple things.  We got the bare minimum of what we needed.  

We got to the apartment and I tackled the steps.  It is so hard to get up them.  It took all the energy I had.  But I did it!   Slowly but surely!  

Mom brought in the groceries and put them away.   We made tuna casserole for dinner which was delicious!!!  

We went through my meds and set them out for the week since so many changes have been made.  After all of that I was exhausted so I put on my pajamas and watched tv on the couch for a little bit.  I ended up going to bed around 9:30.  I fell asleep right away but was up and down all night long in a lot of pain.  At least I am in my own bed though!!!  

Tomorrow is a new day.  We will see what it brings! 

Sunday December 4

Yesterday was Mom's birthday (dec3).   She was here all day in the hospital for my birthday.   She also brought Christmas decorations and decorated my room to cheer me up.   It was a nice little surprise.  

For her birthday we ordered lunch and had it delivered.   We had a fried food sampler platter along with a Stromboli.   She also had BBQ wings and a salad.  It was a nice filling lunch.  After lunch Mom went back to the apartment to bake some cookies.  While she was gone I attempted to nap but was unsuccessful.  She also made dinner and brought it back in to the hospital.   She got back around 4:30.   I heated up the leftover appetizer platter and met her in the family room.  She made potatoes and eggs, my favorite!!!  We sat down and had dinner.   It was really good.   

We went for a lap around the nurse's station and then I layed back down.   I ordered a dinner tray from the cafeteria with cake so she could have a piece of cake for her birthday.   We had a pretty uneventful evening. She left and went back to the apartment and I watched tv and tried to get some sleep.  

Today is Sunday.   Mom came in and brought breakfast.  We sat and ate.   The doctors made their rounds.   There was nothing new to report.   All my lab work looked good.   They had to give me a couple of replacements via iv.  We took a walk and did a lap around the nurses station.   We just chilled out and watched tv until lunch time.   We ordered Chinese for lunch.   They delivered the food and mom and I went to the family room and ate.  After lunch Mom went back to the apartment to do some laundry.   She left so I could take a nap which didn't end up happening.  

Mom called around 4 and said she had a gift card to Red Robin and told me to go online and see what I want.  I ordered a chicken wrap and soup.  She got the order to go and came to the hospital.  She met me in the family room and we sat down and ate.  While we were there this man came in and we got to talking.  He told us he lived in Claysburg but was originally from Altoona and so was his wife.   Such a small world!   His wife grew up a block from where my dad lived as a kid.   The guy started talking about the cafe being closed and walking all the way over to the other hospital to get something to eat etc and how expensive everything is.   I had over half a wrap left and a bunch of French fries so I gave him my leftovers.  He was so grateful.  He kept thanking us.  He insisted that we go with him to meet his wife so we went with him to her room. He introduced us and mom and her were talking about where they grew up etc.   Such a small world.

After dinner we went back to my room.  I layed down and mom headed out around 9.  The hope is discharge on Monday.  

Friday December 2

Well....here's my update I promised.   Last night was a difficult night.   I was up most of the night in pain.  

We made the decision along with the doctors not to be discharged today.   I'm still in too much pain and am not strong enough at this point to be able to go home.   They don't want to discharge me and have me coming back through the ER the next day.   I'm not exactly happy with the decision but i know it's for the best.   

To be safe they did another ct scan to check the G tube and my stomach.   They just came in and gave me the results.  Everything is in place with the G tube.  My stomach is full of fluid.   It's most likely the gastro-view that I had to take for the contrast on the ct scan.  My body just has to pass it through.  So that was all pretty positive news.  

The neurologist came in today and everything looks good on my eeg.  No signs of seizures or seizure tendencies.   He said there is no longer a need for me to take the Kepra!!!   One less med to take a day.  I'm pretty happy about that.   He signed off on me and said he no longer seees a need for me to follow up with them.   

Other than that, my day is pretty uneventful.   Colin left around lunch.  He is going to the cabin to go hunting for a couple of days.   Mom came to stay with me.   She just got here so I'm going to spend some quality time with her.   I will try and update tomorrow.

Have a good night!!

Thursday December 1

I can't believe it's December!!!!!!!   

I am still in the hospital.  I'm feeling a little better each day.   My white blood cell count has come up significantly which is great!  It has been a long couple of weeks.   The pain is still bad but it's getting better.  In the past couple of days I've been undergoing different tests etc.  I've had more ct scans, Doppler scans on my arms and legs, an eeg and lots of different blood tests.   So far everything is looking good.  

I'm having issues swallowing and choking.   The ENT doctors say it will get better with time.  The tumor is shrinking and everything is out of place and has to settle back to where it "should" be.  It's going to take a couple of weeks so we just have to keep an eye on it.  

My body aches and feels like I have the flu.   They are saying it's the chemo doing its job.  I am still having the horrible leg pains and pain in my back due to the hematoma that was created when they did the bone marrow biopsy.  I am walking a lot more than I had been but the more I use it the more it hurts.  No pain no gain I guess.   I'm trying to keep moving and hopefully it will get better day by day.  

They also found part of the reason I was having so much abdominal pain.  My G Tube in my stomach that they use to give me meds etc. when I can't swallow them, was out of place.   The balloon was stuck between my stomach and the abdominal wall.  Dr. Gonoza came in and deflated the balloon and manipulated the tube back into my stomach where it should be.  After he did that I noticed an immediate difference.  

My hair is really falling out from the chemo so I'm debating shaving my head now because it looks awful the way it is and I can't really do much to hide it.   No comb-over will work on this head at the moment 😌.  

I will just wear some pretty hats and scarves.  Maybe even look into getting a wig.  I will keep you posted on that one!  

When the doctors came in today for rounds they said that all my labs are good and everything looks good as far as the transplant is concerned.  My intestine is functioning.   I'm able to eat and drink regular foods/beverages.   So far the cancer/chemo hasn't affected it at all.  That's definitely a positive.  I may even be discharged tomorrow.   Depending on my pain and what the eeg test results from today show.   It will be nice to be able to be in my own bed.  I'm excited.  I will let you know the status tomorrow hopefully.

On another note:   I want to send out a couple of thank you's.  Thank you to everyone who has sent the cards and pictures.   I decorated my room and hung them on the walls.  

Thank you to Colin for the wonderful Thanksgiving dinner.   Thank you for putting up with me and sticking by my side through this whole mess I now call my life.   You do everything you can to keep me going.   Even though I may not say it often I truly appreciate you and all the sacrifices you have made to take care of me.   I know it's not easy.   I love you!

Thank you to my Mom and Dad for the balloons and candy.   I was having a horrible day and that was just the thing to lift my spirits.  I love you and appreciate all you do!!!

Thank you Amber and Bobby for everything.   The surprise visit last weekend really made my day.  Thank you for taking care of my monsters while Cyndee is recovering.   I know they are a handful and I will find a way to make it up to you.   Love and miss you guys!

Thank you Dana for the awesome oil diffuser and beautiful inspiration bracelet.   Everyone loves the diffuser!!!   All the nurses want to go buy it!   They come into my room for the breath of fresh air.  Thanks for taking the time to come to Pittsburgh to see me.

Thank you Shawn and Courtney for listening.   I know when I'm having a bad day I can call and you cheer me up.   I'm looking forward to the wedding and can't wait for you to become husband and wife in June.

Thank you to my cousins:  Stephanie, Melissa and Kristin for the gift basket and amazing cookies (they didn't last long!).  I'm so grateful to have you in my life.   I know it's hard being long distance and stay in touch but you are always there for me in my times of need.   I love you girls!!!   

 

 

 

Thank you to my Aunt Joan and Uncle Jesse for the more than generous gift card.   We will put it to good use.  It is appreciated more than you know.  

Thank you to Amanda and James for the beautiful Alex and Ani bracelet with my angel wing.   I will cherish it forever!!!   Love you!

Thank you to my beautiful nurse Chrissy.   Thank you for holding my hand and soothing me through my bone marrow biopsy.   That hour and a half of torture was more tolerable because of you.   You are an angel.   And....to top it all off....thank you for the best hot chocolate gift on earth!!!   I made hot chocolate this morning and it was the best hot chocolate i have ever had!!!   You rock!!!  

 

Thank you to Elaine and Kelly for selling the soft, cuddly owls as a fundraiser and for the donations.   Once again you have gone above and beyond and I can't thank you enough.    Thank you to everyone who purchased an owl as a gift as well.

Thank you Jeremy and Brooke for seeing the owl fundraiser and helping to sell them on such short notice!!!   You are the best!

And as always, thank you everyone for your continued love, support, prayers and encouragement.  I am so overwhelmed with everything everyone has done for me.   I hope I'm not missing anyone but if I am I'm sorry.   

 

Well.......Happy December everyone.   I hope to get discharged tomorrow to go back to the apartment and sleep in my own bed.   I will keep you posted.   Have a good night and sweet dreams!  Lots of love!!! 

Saturday November 26

Hi!   I hope everyone had a wonderful Thanksgiving!   My awesome husband cooked me a Thanksgiving dinner and brought it in to the hospital since they don't do anything here for the holiday.   You just choose the food off the standard menu.  

 

 

The best Thanksgiving dinner ever!!!

Thank you Colin for the thoughtfulness and hours of slaving over the stove!   I know it wasn't easy but I appreciate it more than you know and I love you to pieces for all you do for me!!   You are amazing and I don't know what I'd do without you!!

As far as progress goes, the chemo seems to be doing its job.  We now have infectious disease doctors on board with our team along with the oncologist and transplant team.  They are all working together to make sure that the treatments are all in my best interest.

I am making it through day by day.   I'm in a lot of pain but they tell me that it means the treatment is working.  

There's really not too much new to report.   Just trying to keep my mind busy and stay positive.  I'm doing my best to talk myself through the pain and manage it the best we can.   

The doctors should all be here on Monday and maybe we will have more information then.  Again, thank you for your patience I will do my best to update as much as possible.  

Sunday November 20

It has been hard to update my blog with everything that has been going on. 

The latest update is that I have the most aggressive type of ptld you can get.  It's a post transplant type of cancer that is incurable.   It can go in to remission but it will always be in my system.  They started me on heavy chemotherapy this week which is making me sick but it seems to be responding pretty well.  The type of chemo I'm getting is called CHOP therapy.   It is a couple different steps that they do each session and I'll get it every three weeks.  I may get the retuxomap treatments on my weeks off from the CHOP.  They are determining all that now.

They are going to have to scan me in the next couple of days to see what progress is being made.   Please bear with me through this difficult time and understand it's going to be hard for me to update daily.  I will do my best to update.  

As far as how things are going....I got two surprise visitors on Friday.   Kelly and Matt cane for the night! It was a surprise!   We went outside and sat at the benches because it was so nice out so the nurses gave me some freedom off the floor.  While we were out there someone sat on the bench real close to me, I looked up and it was Amber.   I started crying and couldn't stop.  She surprised me too.  We went back to my room and they started my chemo.   Kelly and Matt had to leave because of the baby.  Amber and Colin stayed til she was done administering the chemo which took two hours.   Colin went back to the apartment and amber stayed with me.  It was a process but pretty painless for the most part.  Amber left after I got settled into bed for the night.  It was such a nice surprise.   I was really happy they all came.  

The next morning everyone came in at their own pace. At lunch time we ordered food.  Everyone ate and then they started to head out.   It started snowing off and on.   They wanted to leave early enough so that it wouldn't be dark when they were driving.   

They all left by 2.   Colin and I just chilled out the rest of the night. 

Each day so far has gotten a little worse.   They think it's working really well and killing off the cells so I'm in a lot more pain.   It's going to get worse before it gets better is what they are telling me.  We will see.   Im going to try and get some rest.  I will post more as soon as I'm up to it.   Have a good night!

Wednesday November 16

Today has been pretty uneventful.   I'm having a lot of nausea and pain.  Yesterday's treatment really took a huge toll on me.  I haven't been able to do much.   

Colin and I played Phase 10 for a little bit.   He kicked my butt as always.  After cards I had my lunch and took a nap.   Of course I was interrupted four times in an hour.  The hemo docs came in to check on me.  They still have no updates on the pathology.   So we are still waiting.  

I'm just spending the afternoon/evening relaxing.   Colin just went home for the evening and I'm camped out in my bed.  I will update more as soon as we hear something.   We are just in a waiting/holding pattern at the moment.   Have a good evening.  I'll update you tomorrow. 

Tuesday November 15

All my labs came back ok.  There are a couple replacements I need but they are doing round 2 of the chemo today.   They got me prepped and ready around ten or so.   They had to pre-med me with Benadryl and Tylenol to avoid reaction.   They also give me this steroid that makes you feel like you are on fire. 

They started the medicine via iv.   It took 6-7 hours to go in to my system fully.  It really takes a toll on you and wears you out.   I am extremely nauseous and in a lot of pain.   It's all to be expected.  We are still waiting on the final pathology reports and I will update you as soon as we know something.  

I don't have much more to report.   Have a great evening and I will update tomorrow.

Monday November 14

Pretty uneventful day.   Still have no new pathology results.   The stains were sent out they just aren't all back yet.  The doctors are waiting patiently for the results as well.

The "hemonk" doctor that did my biopsy came in and tried to tell me I was getting a spinal tap.  I spoke to my transplant team and was told absolutely not unless they spoke to Dr. Cruz first.   I told her and she seemed a little upset but after what she put me through last week there's no possible way she is laying a hand on me.

I spent the rest of the day just trying to tolerate the pain.   I went to bed fairly early.  It was a long day for me

Saturday November 12

Mom, Dad and Dana came to visit today.   It was a nice change of pace.   It let Colin have some time to go visit with his mom.   Cyndee was hospitalized for a couple things and was moved to the icu.   Please add her to your prayers that everything thing will work out for her.  We are really worried and are all praying that she is strong enough to make it through this with flying colors.

When mom and dad and Dana got here they brought me bags of goodies.   Dana got me this really cool humidifier/oil diffuser.    Dad got everything together and hooked me up.

They also brought me my favorite donuts, whoopie pies, and chicken pot pie to have for dinners.   All of which are to be eaten in moderation.   😀

We sat and talked a little bit and then played cards.   We played Phase 10.   I had never played before and neither did mom.  We caught on pretty quickly.  We played until lunchtime.   I decided I wanted Arby's for lunch so we gave mom and Dana our orders and they left to go get it.  We ate lunch in my hospital room.  After lunch Mom decided she was tired and she left to go get a nap.  Dana went with her.   They were gone a couple hours.   Dad said I napped about an hour.   Mom and Dana came back.   They stayed for a while and left to go get something to eat and go to bed.   I said my goodbyes and they went home.   Time for a new day tomorrow.  

Saturday November 12

Mom, Dad and Dana came to visit today.   It was a nice change of pace.   It let Colin have some time to go visit with his mom.   Cyndee was hospitalized for a couple things and was moved to the icu.   Please add her to your prayers that everything thing will work out for her.  We are really worried and are all praying that she is strong enough to make it through this with flying colors.

When mom and dad and Dana got here they brought me bags of goodies.   Dana got me this really cool humidifier/oil diffuser.    Dad got everything together and hooked me up.

They also brought me my favorite donuts, whoopie pies, and chicken pot pie to have for dinners.   All of which are to be eaten in moderation.   😀

We sat and talked a little bit and then played cards.   We played Phase 10.   I had never played before and neither did mom.  We caught fire  on pret quickly.  We played untilsome  lunchtime.   I decided I wanted Arby's for lunch so we gave mom and Dana our orders and they left to go get it.  We ate lunch in my hospital room.  After lunch Mom decided she was tired and she left to go get a nap.  Dana went with her.   They were gone a couple hours.   Dad said I napped about an hour.   Mom and Dana came back.   They stayed for a while and left to go get something to eat and go to bed.   I said my goodbyes and went home.   Time for a new day tomorrow.  

Friday November 11

Nothing new going on.   Still being told we are waiting on the final pathology reports before they can start treatments.   They also scheduled my follow up in few weeks for a repeat ct scan.  

Wednesday November 9 cont'd

They just got the result as back from the CT scan of my hip.  There's a hematoma around the site where they did the biopsy.   They said my body should re-absorb it.  They said it going to be painful.   They will come to me and talk to me in the morning.   

I'm just supposed to take it easy for now and get help going to the bathroom or getting up.   It's not really going to hurt anything except cause a lot of pain.   Some of the pain is nerve related as well.   They gave me some heat packs to put on it for now.  And are treating it with pain meds.   

I will update more tomorrow.   Just want to let you know the update so you weren't worrying.   

Have a good night!    

Wednesday November 9

Colin stayed the night last night since they were giving me the first round of the chemo drug.  He didn't want to leave me in case anything happened during the night or if I had any reactions.

They started the meds around dinner.   I had to be pre-medicated before the could give me the rotuxamap.   They gave me Tylenol, Benadryl and a steroid.   I'm ok with the Tylenol and Benadryl.   I had never gotten the steroid they gave me before but it made me feel like I was on fire when they gave it to me.   It was a very odd feeling.   The heat feeling started low and creeped up through my body and into my face.  Odd feeling.

About a half hour later an iv team nurse came in to start the medicine.   They start it at a low rate and take vitals every half hour.   I took it ok for the most part.   At times it was nauseating, it also made me itchy and hot.   The Benadryl helped a lot with that.  It took a couple of hours for the medicine to finish.   It was pretty potent but I think I handled it pretty well.  

I was up most of the night getting meds, getting labs drawn along with feeling like crap.   It was a pretty crappy night.  

Today has just been a day of recovery.   I am in a lot of pain.   I'm really nauseous and have added pain in my right hip and leg from the biopsy yesterday.   I'm having a hard time walking on it.  I'm just going to rest today but wanted to make sure you had an update.  

A

As of now we do not have any additional information except the diagnosis.   Hopefully tomorrow we will have some more biopsy results.   I will keep you posted as we learn more.   Have a good day!!!  Hopefully I can get a nap in and get a little sleep.   As always thank you for your support!! 😘

Tuesday November 8

1st of all......Happy Birthday to Honey.  Today we are celebrating you even though you are no longer with us.   You are always in my dreams and thoughts and prayers.   I know you are with me in more ways than one as we are going through this horrible ordeal.   I love you more than anything and hope you are having the best birthday you could possibly have now that you are in heaven with Pap Pap, Jackie, Steve and your siblings.   We miss you so much!!!   Party it up and make sure you have a beer and a piece of coconut cream pie to treat yourself!  Love you to pieces!!! 💗

We have a little more information now so I can give you a more concrete update.  

Biopsy results have determined that the mass in my neck/behind my ear is called PTLD.   It stands for post transplant lymphoproliferative disorder.   It's basically a type of cancer that transplant patients get.   There are a bunch of sites online that you can look it up on and it explains it.

In order to start treating me for it they needed to do a bone marrow biopsy.   They did it this morning in my room at the bedside.  That was the most painful procedure I have had done while awake.  The procedure took about an hour.   I want to thank God for my nurse Christine today.   She held my hand and talked me through breathing in a very soft, soothing voice.  She let me squeeze her as hard as I could.   I'm surprised she isn't black and blue.  Thank you Christine!!   Not sure I could have done it without you!!

Colin was a trooper through the whole thing.   Even though he hates needles and blood he was able to soothe me through the procedure and rub my legs.  I was so proud of him!!   Thank you Colin!!!  This is difficult and I am sure it was hard to watch.  

After the procedure I had to lay on my back for a few hours.  I'm being given my first dose of the 

Rituximab here shortly.  They pre-medicated me to hopefully avoid any complications.   I will update more later as we go through this so please bear with me.   It's a new thing for me so I'm not sure how I'm going to feel.  Thanks!!!   Please keep sending the prayers my way!

Sunday November 6

Docs came in early today to make their rounds.  There really wasn't anything new.  They went over my labs and gave me the replacements I needed for mag because it was a little low.  They gave me all my supplements.   And hung different Iv's throughout the day.

Mom and Dad had come for a visit they got here early Saturday morning and left yesterday around lunchtime.   It was really nice seeing them and having them here.   They were also here when the doctors made their rounds which was nice so that they could ask questions  that they had.   I think them being able to hear what the doctors had to say made things a little better so they understand why we don't have concrete answers just yet.

We also got some surprise visitors today.   My cousin Melisssa stopped in to the hospital with her daughter Madison and son Stevie.   They stayed for a little over an hour.  Mia, the youngest daughter was at a dance competition in Monroeville so they were really close and decided to visit.   They have been very involved and very supportive throughout my entire ordeal starting with the Volvulous is Dec 2014.  Thank you for coming to visit.   It was a nice surprise and always great to see you!  

Colin was in and out running errands and cleaning up the house etc so I could visit with everyone.   He didn't want to be in the way and we are in a horribly tiny room.   He came back to hang out right after Mom and Dad left.   

My day.....still having horrible pain in the abdomen and my face, neck, throat, ears etc.   it's still a waiting process.   All they can do right now is keep me comfortable.  Hopefully we will know more tomorrow.   I will keep you posted in the next day or so.   Have a good night!   Sweet dreams!!!!!   

Saturday November 5

I was up all night/morning.   I'm dealing with a lot so please try and bear with me.   I am undergoing some extensive testing on my throat, neck, lymph nodes, ear, nose and head in general.  I have swollen glands, sore throat, constant nose bleeds, earache and headache.   We only have preliminary information at this point in time and are in a waiting process.   The doctors did a biopsy on me on Wednesday via a small surgical procedure.   They did find a mass but we are waiting on the pathology results which wont be back until next week.   The oncology team will then meet with my transplant team and will come up with a plan of attack.

Please understand that we are still trying to wrap our heads around all this new information and will do our best to keep you informed as things happen.  This is a lot of new information for us to grasp and I don't mean to be rude by not posting.   I've just been having some extremely difficult days.   

That being said, as soon as we have a plan of attack and find anything out I will post more.   Thank you so much for your constant love, support and prayers.   We really need them right now so please keep them coming our way!    Thank you!!!!   Love you all!!!!   😘❤️😘💜

Wednesday November 2

I can't believe it's November!!!!!

I'm still in the hospital under observation.   They did a minor surgery late Tuesday afternoon to biopsy a small pocket they found behind my nose.   I am in so much pain.   My abdomen is killing me and on top of that my whole face hurts.   My glands, throat, ears, nostrils etc.   it is extremely uncomfortable.   

I'm so exhausted from the procedure but making due.   My nose has been bleeding for the past two days.   They gave me some sprays to help clot it.   Hopefully it starts to work soon.

It was a long day just trying to get comfortable and to get some actual sleep.   I will post more tomorrow.  Have a good night.  

Tuesday November 1.

Fastest update ever.    Well.....biopsy is done.   They literally whisked me away around 2:30/3:00 or so.   I was in the bathroom,  next thing I know, the nurse is in there with me changing me into a gown and unhooking my iv from the pole so the surgeon will be able to hook me up to what they need.   They put me on a stretcher and took me to the OR.   I was prepped and out of it before 3:30.   Now I am in recovery and waiting to go back to my room.

The doctor came in and reviewed what he found.   It's not a few fluid / puss sacks, it's actually a mass of some sort.   He took biopsies from several portions of the mass.   Unfortunately they won't have the pathology results bc it takes a few days to grow any bacteria etc. sucks but as soon as they give us any info I will let you know❤️

Tuesday November 1

1st Things 1st......

 

I know I haven't been posting much.   I'm really sorry.   I know it's the least I can do to keep those of you following me and praying for me updated so you know what's going on.    

The last 2.5 weeks have been pretty difficult for me.   I was hospitalized two weeks after my surgery.  I was discharged on Monday (this past Monday).   I went home with Cyndee to my apartment because she came to give Colin a break.   We got back to the apartment around 2.   I layed down and tried to nap.   She hung out in the living room and checked on me several times.   I layed in bed and continually felt worse.   On top of my usual abdominal pain I now have a sore throat, glands the size of golf balls, an earache, jaw ache, lots of mucus that won't come out and no hearing in my right ear.

We callled the transplant coordinator on call with no response.  I called back and was told they would be in touch shortly.   No one callled back so we decided to just go to the er.  We got to the hospital and were taken right back.   They gave me pain meds, fluids and Benadryl.  The ER docs spoke to my transplant team and got ENT involved.   They did a ct scan and MRI of my neck and ear areas.   There are pockets of fluid that they aren't sure what they are so now I have to be taken to the operating room for biopsies.   I'll be put under general anesthesia and intubated during the procedure.   It could be as simple as draining fluid from the area and it should clear itself up or it could be as complicated as removing adenoids, tonsils etc.  

There is a substantial risk of bleeding for me because of all my blood thinners but we don't really have much of a choice.   Dr. Gonoza said he will be there with me through the procedure in case of any complications.   So for now, I could be called at any time to go down to the or.   I will try to be better about posting.   I will be in touch.   Have a good evening!

Saturday October 22

Last week I was mia.   I apologize.   It was a week of trying to focus on recovery as well as trying to manage the pain.   They had me on a pain pump which caused all kinds of side effects.   Not very pleasant at all.  

At this point I am off of the pain pump and managing the pain on my own by asking for it only when it's needed.   We will see.   We are slowly working towards taking no pain meds at all.   They are hoping to get things under control and discharge me on Wednesday.   Things are slowly getting there but the doctors are really happy with my progress and are just worried about the pain control.  

I will update more later.   Again sorry for not posting

Tuesday October 18

Had another BM this morning around 4:30.   When the docs made their rounds I actually looked at my incision.   It's along the same line vertically and then the horizontal line is added where the ostomy was. 

I know I told you about it already but today was the first Day i actually had the guts to look for myself.   All the bloodwork came back ok with the exception of needing a bunch of iv replacements.  

Dr. Gonoza said to take it easy today and not to push myself too hard so I'm trying to do just that.  I've been up and down to the bathroom at least once an hour because of all the iv fluids and that's turning out to be a LOT more excercise than you can imagine after having your stomach split open like that. 

Other than that nothing new to report.  I will post more tomorrow!  Sweet Dreams!!!

Monday October 17

Was up all night between the iv antibiotics, iv meds, pain meds, supplements, waiting on iv team to put tpa in my picc line etc.   they were in and out of my room all night into the morning.   I was low on a bunch of suppplements again so they started them extra early.  Around 4:30am.   I got the urge to have a bowel movement.  I went into the bathroom and did!!!   My first bowel movement in about 2.5 years!!!!   I was so excited that I took a picture and sent it in a text message to Colin.   Not too many people can really understand how exciting such a minor thing (to them) can be when you are in my situation.  

Colin came in around 6.  The docs made their rounds around 9 or so and said that everything looks good so far.  I'm still on a liquid diet but haven't had too much of an appetite anyway.   I'm on so much iv fluid that it's coming right back out.   Sorry I went into detail with it!!   It's just a huge milestone for me that some will understand.  

The day was pretty uneventful otherwise.  I wanted to share my good news.    Have a good night!!!

Sunday October 16

So sorry it's been a few days since I've I've updated.  Things have been a bit hectic.  Surgery went really well. The doctors are really happy with the outcome. On Friday they removed my NG tube and the IV they put in my arm peripherally.   

I have been having a lot of pain. The doctors are managing it well for me. They have changed the medications around in order to help alleviate it.

Because of the pain we haven't been doing much.  I've been laying around and trying to deal with.   Thursday was my first day out of bed. They move me from my bed to the chair. I sat in the chair for about 45 minutes. Yesterday I got up out of bed and walked to the nurses station twice  today they removed my folley catheter so we could see if I can urinate on my own.

10/12

While I was pacing the hallways before Heather's surgery, I ran into Dr. Cruz. He pulled me aside and said "Everything's gonna be alright". Again, I believed him. That man has done more for Heather and I than anybody can ever imagine. So, not that I don't say it every day,  but thank you Dr. Cruz...you truly are a master of your craft. 

In true Heather fashion, she turned a five hour surgery into three and came through it well. Dr. Cruz delivered on his promise he made back in March and was able to reconnect her.  He also removed some scar tissue and a pocket of fluid he found, but all in all said everything looked "good and healthy". Heather is in recovery now and will be moved to a floor later this evening.  The hospital stay looks to be between 7 and 10 days with emphasis on the latter. She'll have a tube in her nose pumping stuff out of her stomach until probably Friday or Saturday, so talking may be a bit much.

 I'll do my best to update this as I get news,  but I'm hoping she'll be able to do it herself...

-C

Tuesday October 11

Woke up and went to clinic.  We were there at 6.   They called us back and drew my labs.   Bill stopped in and went over a few things for surgery tomorrow.  He said that we were free to go when they were done.   The nurse changed my dressing and discharged us.   It was about 8 when we were set free.   It was pretty awesome!!!

We got home and I got in the shower and did my first hobo lenses shower.   As I was getting  dressed my phone rang.   It was Jennifer (my transplant coordinator).   She was calling to tell us she knows they discharged us but we had to go back to sign it the consent for surgery.   We had to do it today so she can fax it to the appropriate departments and there won't be any delays tomorrow.  

Terence

We headed back to the hospital.  When we got  there rwe went into the clinic.  I explained the situation and she told us to sit in the waiting room.   I sat down and called Jennifer.  She said she would be up to get us in about 10 minutes,   She came to the waiting area andtook us to a clinic room.  She said Dr Cruz would be in when he was done with the patient he was currently with.   He came in and went over what he is planning to do.  He went over what meds to take in the morning.  The OR is scheduled for 8.  We have to be at the hospital at 5;30.   Its going to take about 4-6 hours.  I'm going to have Colin update the blog after surgery so keep an eye out for updates.  Please say a prayer for me.   Sweet dreams!!!   

Monday October 10

Got up early and headed to the hospital for my colonoscopy.  We were there by 6.   They took me back around 6:30 and got me ready.  Around 7:15 they took me back to do the procedure.   It took about an hour.  I was taken to recovery.  The doctor who did the procedure came to recovery and said everything looks good.   They took biopsys and said they would have them back tomorrow.   They found moderate colitis in my large bowel.  It could be causing some of my pain.   It won't effect the surgery at all.  We waited about an hour and were discharged.   

We headed home.   When I got home I went to the bedroom to lay down.   They blow you up with air to do it and it caused spasms throughout my abdomen.  

Colin left to run some errands and I stayed home.  I fell asleep for about an hour.  I got up and straightened up the mess I made in the kitchen.  It was exhausting just doing that.   

I made some tea and settled in for the night.   Tomorrow we have to be at clinic at 6 for bloodwork.  That was my day in a nutshell.   Have a good night.

Sunday October 9

Woke up early and took my meds.  Layed back down and watched tv for a little bit.  Colin came in to the bedroom to tell me he was going for a bike ride.  About 10 minutes later he came through the door and told me he went to get his bike out of the garage and it's gone.   Someone stole a bunch of bikes out of the garage.  They cut chains and locks off of them and everything.  Luckily mine wasn't stolen.    He's going to report it to the leading agency tomorrow and call the police to make a report as well.  He ended up leaving and going for a walk instead so that he could cool off a little bit.

I stayed in bed.  I'm not allowed to eat anything today but I'm allowed to have clear liquids until midnight.  I have to do a colon prep today so I have to be close to the bathroom at all times.   Sounds like fun!!  Doesn't it?  Luckily it's an easy prep.  I don't have to drink anything nasty or take anything.  I just have to do 4 enemas.  I did the 1st one at 11, the second at 1:30, the third at 4:30 and I'm doing the fourth at 8.  So far everything is working ok.  Moving in the right direction.  

I got out of bed to shower after I did my 4:30 enema.   I showered and changed my ostomy bag and cleaned my ostomy really well.  Praying that this is the last time I will ever have to use an ostomy bag for the rest of my life and that God will give me the strength to get me through surgery and everything goes well.   I will also pray for my doctors to give them the knowledge and expertise to get me through this.   This is going to be a very stressful week but it will all be ok in the end.  

Tomorrow is my colonoscopy.  We have to be at the hospital at 6.   Tuesday I have to go to clinic for more labs to be drawn.   We have to be there at 6.   Wednesday is surgery!!!!!  Surgery is scheduled for 8am but they want us there at 6 to prep for it.   Surgery is going to take 4-6 hours depending on what they find, if they find anything etc.   They are going to close me up and close my ostomy.  They are also going in a little deeper and are looking for adhesions (scar tissue) or blockages that can't be seen on an X-ray.  He said it happens sometimes.  I will try to have Colin update my blog as soon as surgery is done so that everyone knows what's going on.  

I'm going to take my nighttime meds, make myself some sleepy time tea and go to bed.  I will update more tomorrow.   Sweet dreams!!!  

Saturday October 8

Had an ok night of sleep.  I was up off and on.  I woke up, took my meds.   I hopped in the shower and got dressed.  I made taco casserole and broccoli casserole so I could freeze some and we could have some for dinner.  I also organized some of the cupboards because they were overflowing and unorganized.   After all that I ate lunch and layed back down.   

Apparently I fell asleep.  I was in such a deep sleep that Colin came in to wake me up.   He scared the daylights out of me.  I was so confused when he woke me up.   I thought it was Sunday morning at 5am not 5pm Saturday.   I argued with Colin about it.   Then I looked at my phone and he was right.   It was a pretty scary moment for me.   I ate a light dinner and took my meds.

After my meds I went in to the bedroom and layed back down.   Colin had to run and pick up a prescription for me so I went along with him to get out of the house.

We got home and I went straight to bed.   Even though I had a long nap, I fell asleep by 10.  Hopefully you have a good night's sleep as well.  I will update tomorrow.

Friday October 7

Woke up at 5.  Got my bags packed up and off we went.   We were at the hospital by 6am.   They took us back around 6:30.   They drew my labs and did some blood work.   I was in a lot of pain so they gave me a shot of pain medicine.  

The nurse came back about an hour later and said they had to give me magnesium.   They gave me a shot of Benadryl because I have a reaction to the mag.  I get really flush, hot and itchy.  They hooked up the mag which runs for two hours.   Then we had to wait for the docs to make their rounds.   They came around 11.   They went over the procedure for my surgery on Wednesday as well as the physical I was going to immediately after my appointment in clinic.   We had a 2:00 scheduled pre-surgery physical.  

After the doctors left we waited until about 1:30 and then went downstairs for my physical.  The doctor doing the physical went over my history.   He went over the ekg I had last week.  He also went over the last X-rays and ct scans I've had as well.   He told me that everything looked good.   He checked my heart and lungs and I was cleared for surgery.

We left the hospital and headed home.  I went to the bedroom to lay down.   Colin got me out of bed to eat dinner.  I got up, ate and went back to bed.  I took my meds and layed down.  I just layed there until I fell asleep.

I have the weekend off so let's see what it brings!   Goodnight!

Thursday October 6

Woke up.  Took my meds, ate breakfast, showered and got dressed.  Colin left to run a couple of errands.  While he was gone I cooked the ground turkey so that it wouldn't go bad and dinner would be good and ready.  I made a ground turkey stew in the crock pot and put it on low.   I took the other half of the cooked turkey and put it aside.  We are going to have taco casserole with cornbread for dinner Friday.  It's one less thing to worry about.

Colin got home and we ate leftovers for lunch.  After lunch I called Verizon to see if my cell phone had come in yet.  It's been on backorder for days.   The guy that answered the phone said that they just opened the new shipment and it was there.   I got dressed and asked Colin to run me across the street to Verizon to go get it.   We went and did our thing.   I got my new phone.  It didn't cost anything because of the type of upgrade we had so it made it even better.  I got the iPhone 7 in rose gold.   It's a really pretty color.   To transfer the info and set up the new phone we were told it would be about an hour.  We left while it was updating and ran over to Ulta.   My eyebrows are horrendous so I asked if they could squeeze me in.  They waxed my eyebrows and I felt much better.

We left Ulta and went back to Verizon.  My phone said it had 45 minutes to finish setting up.  I wasn't feeling well so Colin took me home so I could lay down for

a while.  He waited about a half hour and then left to go get my phone.

When he got home he brought the mail up with him. I love getting the mail and having little notes sent to me.   My buddy Thomas sent me this  in the mail:

 

He traced himself with his arms open so that he could give me a big hug.  

I also got this awesome card from a very wonderful woman who is extremely selfless and would do anything she can for you.   I can't thank her enough for everything.    Carol Heth - you are amazing!!  Thank you so much!!!

How could these two cards not make your day 😀

I went in to the bedroom and layed down for about an hour.  I got out of bed around 5:30 and got dinner.  It was pretty good.  It was a little bland so next time I would probably add some additional seasonings but you never know until you try it.

After dinner I took my 6pm meds and got ready for bed.  I layed down and watched tv.  Colin came in and gave me my lovanox shot and I settled in for the night.  Tomorrow I have clinic in the am and a physical afterwards.   We will see how that goes.   I will post tomorrow.   Have a good night!