Update from Colin

To say the last few years have been an emotional roller coaster would be the understatement of the century. The ups and downs, the back and forth... It has all been a process, and Heather has taken it in stride. About a week ago, we were told Heather has PTLD (transplant-related cancer) in her brain. We were transferred 3 miles across town to UPMC Shadyside. There, we were given her options for treatment. Everyone knows Heather is a complicated case, one that takes some of the best medical minds in the world to decipher. Together we discussed 3 different types of chemotherapy, and/or radiation. All have benefits and drawbacks. Chemo is tough on the heart and kidneys and leaves the body ripe for infection. The body can only take so much, and hers has been through the ringer. Radiation is a relatively painless process and much more targeted to a specific area, vs. chemo that travels throughout the blood stream. The decision was made to go forth with radiation. Radiation has its downsides.  It can leave you tired, run down, and there are concerns about long-term cognitive issues. Honestly, when it came down to it, it wasn't much of a decision.  Dr. Lieberman said Heather's body is not strong enough for chemotherapy.  In his words, "It might kill her."  The treatment plan is this: 10 treatments over two weeks, Monday through Friday, with the weekends off. As I write this we have 2 treatments in the books. I look into her eyes and see the woman I married behind them, knowing full well she can hear and she knows what I'm saying. It's just a battle for her to reply. I've said it before and will continue to say how much this girl impresses me. She is strong, caring, with spirit that won't quit and a heart of gold. Through all of this, she will prevail. Failure is not an option and neither of us know the meaning of the word quit. 

Thank you to everyone for all the support and prayers all of you are amazing.  

Wednesday June 14

Nothing new to report really.  Dr Cruz says not to worry about the spot on my brain.  They are still waiting on the results from the spinal tap.   

So basically I have no answers yet and it's frustrating.  Monday night I passed out.  Luckily Colin was holding on to me when it happened and was able to catch me before I fell.   Last night the same thing happened.  They are calling a cardiologist to see me to see if it's something to do with my heart.  They are also reviewing all of my meds to see if maybe it's medicine related.

I have just been hanging out in my room with Colin and waiting.   It's getting old but it's what we have to do.   

I'll post more later.   Have a good day!!   

Thursday June 8

I know it has been a long time since I've posted.   A lot had gone on since my last post.  I'm at a loss for words.

Long story short....the beginning of may I was in the hospital getting ready to be discharged.   All of a sudden I couldn't breathe.   I looked up and saw the aide.   I told him I can't breathe and that's all I remember.   The next few days were a complete blurr.   I was in the icu.    I remember holding Colin's hand and it happening again.  Everything in my body froze and I couldn't breathe.   I don't remember anything except for him telling me it would be ok.  He was squeezing my hand and rubbing it.  That's the last thing i remember.  

I woke up a day or two later.   They tried to explain to me what happened but I still don't understand.   Something about too much fluid around my heart.  No one can explain how or why.  They have explained it to me multiple times but I still can't comprehend what I'm being told.  Basically it is called flash pulmonary adema.  It's when your lungs fill up with fluid.   So I was basically drowning myself.   

I have been doing better.  My lungs are clear.  I have been feeling better.  Last week I started having issues with my head being heavy.   They did an MRI and found a spot.  They don't know what the spot is so they did a lumbar puncture yesterday to try and determine what it is.   It was not a very comfortable procedure but I did it.  We aren't going to get the results back until after the weekend of course.  I will post more when we learn more.   Sorry again for being mia.  

Sunday April 30

It's been a week since I've updated.  

Monday - We finally got to the hospital around midnight.  I got settled and ready for bed.  Colin was already there by the time I got there.  He was camped out in the chair next to my hospital bed.  Woke up Monday morning and waited for the docs to make their rounds.  Dr Gonoza was on call.  He basically said that my counts are starting to trend down and they are going to do some more blood work.  He said that it's going to take a few days.  He consulted transplant infectious disease for their input.  Basically we are waiting.  They are also going to consult a pulmonary doctor as well because of the pain I'm having when I breathe.  

Tuesday - we had a pretty sleepless night.  Colin was up most of the time with me as well.  Bill came in before 7 to check on me.  Everything looks good on my labs.  They are still waiting to see if any cultures will grow.  It takes a couple of days.  Bill left.  I showered and changed my clothes.   The docs made their rounds.  I was told the same thing pretty much.  We are waiting on the bloodwork.  Colin and I spent the day being lazy.  I am having a lot of pain.  I've been taking the meds around the clock between all the new antibiotics and pill changes.  In the afternoon the infectious disease doctor stopped in.  He examined me and went over the different meds with me.  They stopped a couple of times to see how I'm feeling and if it was helping at all.  They don't think it's the pneumonia causing the pain but can't be sure.  He wants to wait and see if the cultures grow.

Wednesday- woke up, got dressed, changed and ready for the day.  Bill came in bright and early.  He went over my labs.  I needed Magnesium and Potassium so he put the orders in for me.  He left and said they would be back to make their rounds.  Dr Gonoza came around and said we are in a holding pattern.  They want to wait for the rest of the bloodwork to come back and go from there.  Colin and I watched tv most of the afternoon and then played cards.  We try to keep busy.  Sometimes it's a lot harder than others.  He decided to make a trip back to Lancaster and go hunting since we are just waiting.  Turkey season starts on Saturday.   We have been doing nothing but arguing so it will be a good thing.  Mom has off work until Saturday so she's going to come to Pittsburgh and relieve Colin.  Colin got packed and left early.  Mom drove and was here in Pittsburgh a little before lunch.   She stopped and got Panera which was a nice treat.  We just watched tv and hung out the rest of the day.  We had leftovers for dinner.  We went to bed after dinner.  

Thursday - woke up, was up all night off and on with all the meds and ivs.  Mom kind of got to see why I don't sleep and i get so miserable.  On top of it all my bag leaked.  I hopped in the shower and cleaned myself up.  I put on a new bag.  I had breakfast and we went for a walk to keep moving.  I'm starting to have more pain.  They can't explain the source of it and are going back and forth on whether or not they should scope me.  They said they would let me know.  Once again it's a waiting game.

Friday - mom is still with me.  She has to leave today because she has to go back to work tomorrow.  The doctors made their rounds and told us basically the same thing.  We are waiting on the cultures.  Dr Gonoza said that he definitely wants to do the scope and that it will be Monday morning.  He said he thinks it's necessary.  He also said he would consult with dr Lopez to make sure everyone is on the same page.  Dr Lopez was in agreement so I'm getting the procedure on Monday.  I called Colin and told him,  mom left after lunch to head back to Lancaster.  They left me here in Pittsburgh.  They might as well do their thing because I'm in the best place I can be.  After mom left I just watched tv.  I of course got hooked on say yes to

the dress.  My favorite!!  I had my dinner and went to bed.  I'm still having a lot of pain.  They are giving me meds around the clock.  Hoping it's a better night tonight and I can get some cat naps in at least.  

Saturday -

Nothing new to report.  I was up all night in pain.  It's getting worse from the neupogen shots.  My bones and joints ache.  Dr Lopez made his rounds and said to prepare for the scope.  He said they are definitely doing it on Monday.  I am in so much pain that I spent the day in bed.  I have to relax and hopefully work through this pain.  I watched tv all day.  I spent the day in bed.  I got up and walked to the nurses station a couple of times.  It was an uneventful day.  Colin called and checked in with me a couple of times.  I keep telling him everything is good and to have fun.  He sent me a picture of a turkey that he and Daryl shot.  He is a pretty big bird.  Im really happy they got one.  I hope he gets another one.  I had a bag explosion again and had to clean myself up.  This whole bag situation sucks.  I cleaned it up, showered again and went to bed.

Sunday - woke up early when they did my blood work.  I was able to get about a four hour stretch of sleep in last night so that felt really good.  Dr Lopez made the rounds this morning.  He said to take it easy today and not over do it.  He is still waiting on results from all the bloodwork and the neupogen shot reactions.  He said he will see me tomorrow.  I called Colin and told him what the plan is.   We don't know a time yet but they said they hope it's first thing in the morning but they can't make any promises.  I'm just going to take it easy today.  Mom is going to drive out after work so she can be here for the procedure so I'm not alone.  She will get here around 10 or so tonight.  They just brought my lunch tray so I'm going to eat now.  I'll try to post after my procedure depending on how i feel.  Have a good day!!  Keep me in your prayers tomorrow!!

Friday April 21

I've been in the hospital at LGH since before Easter.  We have been in a holding pattern basically to see what the next step is.  

Around lunch the nurse took my vitals and I had a slight fever 100.7.   She came back about a half hour

Later and it spiked up to 102.4.  We called the transplant coordinator and they said I needed to go

back to Pittsburgh.  They were transporting me that evening.  We got news around 7pm that they didn't have any available beds and that we would have to wait until tomorrow.  

Well...today is Friday.  I waited all day for news on being transported.  Mom came in in the morning and hung out with me and we had lunch.  She stayed for a couple of hours to keep me company.  She left around 2 or so.  She had to go home and get ready for work.  After she left we finally got news that they had a bed available.  They just needed to coordinate transport.  They said it could take a few hours/. I waited a while:  Around 4:30 the nurse came in and said that they called and should be here around 7:30.  I ate my dinner (chicken parm w/penne pasta) and got all my things organized and packed up.  Colin had taken the majority of it home with him yesterday to be ahead of the game so I didn't have much to do.  At 7:30 the nurse gave me my meds.  The ambulance still wasn't here yet:  I watched tv for a little bit and a little after 8 the emt came to my room.  They put me on a stretcher and off we went.  We just left and he said it would take a little over 4 hours to get there.  I'm in the ambulance and headed to Pittsburgh.  Wish me safe travels and good luck!!!  

  

Monday April 17

I was discharged from Pittsburgh on Wednesday.   They gave me a couple of iv supplements and we were discharged around 3.  We made it back home to Lancaster in about 4 hours.  I was not having a good day.  I cried most of the drive home and cried when we got home.  I'm not even sure I know why I was crying. I was just an emotional wreck.   Colin was finally able to calm me down and I went to bed.

I woke up Thursday morning and was feeling exhausted and had little energy.  I hung around the house and spent the majority of the day in bed.  The traveling on Wednesday and the emotions got the best of me.  I went to my parents in the afternoon,  I took a nap and watched tv and hung out.  I was supposed to go with shawn and Courtney to their tasting for the wedding but couldn't make it because I had to wait on the home nurse to come do bloodwork.   She was supposed to be there at 4:30 but didn't get there until close to 7.  There was apparently an accident on the highway and she was stuck in traffic.   She came and did my labs and evaluated me.  She didn't leave til close to 8.  After she left shawn and Courtney brought me some leftovers from their tasting and she brought

over the cake samples too from the her appointment with the cake lady.  The food was really good and the cake was amazing!   After we hung out and snacked Courtney took me back home.   I put on my pjs and went straight to bed.  

I woke up Friday and was really exhausted.  More so than I was on Thursday.  I took my meds and layed in bed.   Around lunch I really started feeling bad.  I took my temp and it was 101.3.  We callled the coordinator and she sent us to the er.  We drove to LGH and they took us right back.  The doctors in the er were in constant contact with the Pittsburgh doctors.  They did some testing and it was determined that I have fungal pneumonia.  They were treating me for bacterial pneumonia.  I was admitted to the hospital.  They got me a room fairly quick and once I was settled and everything was in place Colin left and I relaxed (hahahaha) and went to bed.

Saturday was pretty uneventful.  Mom and Dad came to visit and were here bright and early.  Mom stayed most of the morning and dad picked her up around lunch.  Colin got to the hospital around 6am.  He hung out with me all day.  He went home around dinner.  Amber came to visit and brought me a milkshake!!!   It was delicious!!!   Brynn stopped in for a visit too.  It was a nice surprise.   That's one of the things that will be nice about being back in Lancaster.  I'm surrounded by my family and friends and if I need anything they are all so supportive and close by.  It can give Colin a little bit of a break.

Sunday - Happy Easter!!   I had a very uneventful Easter.  I had an egg sandwich for breakfast.  It's so different here.  You can't call and order a tray.  You have someone who comes to the room and gives you a few choices so there's really no variety at all.  Colin was here bright and early.  He sat with me in the morning and we watched tv and took a couple of walks.  Cyndee came in before lunch and brought me my favorite jelly beans for Easter.  I was excited!  The two of them stayed for a couple of hours and then went home after lunch.  I had ham and mashed potatoes and green beans.  They also added an Easter surprise to the tray with a homemade peanut butter egg.  I ate half of it.  I took a nap in the afternoon because I was so exhausted.  The doctors made their rounds and basically said they aren't changing anything right now. They want to see how I respond to the meds and the regimen they have me on.  They are keeping me for observation.  Dinner came around 4.  It was terrible.  It was some sort of Salisbury steak.  I couldn't eat it.  I called Colin and he and Cyndee brought me a kids meal and frosty from Wendy's.  I ate dinner and they left to go grab something to eat.  I layed down and watched the naked and afraid marathon that was on discovery.  I got all caught up.  As far as how I'm feeling-  I feel good for the most part.  I have a lot of chest pain from the pneumonia.  They are managing the pain but not enough that I could go home.  I went to bed for the night.

Monday - Colin came in around 6 this morning.  He stayed and hung out until 9 or so.  My mom came in to visit.  She stayed until after lunch.  I spent the morning in pain.  I did two laps around the nurses station to keep moving.  I still haven't seen the doctor yet and it's close to 3.  Not sure why it takes them so long.  Mom left around 2 so I'm here by myself but I'm going to try and take a nap since all my meds are caught up and I'm on my own.  Hopefully I can catch a little sleep.  I will try to post an update when I get one.   Have a good evening! 

Tuesday April 11

A lot has been going on the past week and I'm sorry for not keeping up with my blog.  Here's the latest and greatest.....

Last Saturday we officially moved back to Lancaster.  Brooke, David, Max, Gray, Libby, Quinn, Phenix and Ireland all came to help us move.  They had the truck loaded and ready to go in about an hour.  They left the bed so that I would have somewhere to sleep.  Quinn and Phenix went to their hotel to check in and get ready for dinner.  We had no food so we made plans to go to dinner as a family.  We ended up at a hibachi restaurant.   It was a lot of fun being able to spend time together.  We don't get the opportunity very often.  Ireland is the cutest little girl ever.   The fire and flames didn't bother her at all.  After dinner we stopped at Pages and got ice cream.   

We all headed back to the apartment and the kids, Quinn and Colin played bean boozled.   It's the jelly belly game where you spin and land on a color.  You have to pick a jelly bean of that color and you either get a good flavor like pear or a horrible one like vomit.   You aren't allowed to spit it out or throw it up or you lose.   It's fun to watch the reactions on people's faces.   After they were done Quinn and Phenix left and we all went to bed.  

Sunday morning we woke up bright and early.  We went to Eat N Park for breakfast.  We went back to the apartment and loaded the bed and all the rest of the stuff onto the moving truck.  Once everything was out of the apartment we cleaned.  Brooke was a cleaning machine.  Her and Colin had the apartment spic and span in no time at all.  We loaded up the cars and our little convoy left.  I rode with Brooke in the mini van and Colin took Grayson with him.  The ride home was uneventful.  It's a boring drive but Brooke and I talked the whole way.  We stopped at a rest stop once and grabbed Burger King for lunch.  We ate our lunch in the car.  

We made it home in under four hours.  When we got there, they started unloading the truck and I layed on the couch with Libby and watched a movie.  Colin had organized and unloaded everything with the help of his friends who are the best!!   We couldn't have done it without them!!!   They helped unload everything and hang the tvs and re-arranged furniture.  It was a lot of hard work.  They made our lives so much easier.  Thank you guys!!!

Colin dropped me off at my mom's and I stayed there for the night.  It was overwhelming and Colin didn't want me stressing.  I spent three nights at my Parents.  I went home and started to slowly tackle my clothing and put stuff away and organize it.  

I didn't do much during the week.  I was too exhausted.  It was a pretty quiet week.   On Saturday I started getting chest pains that feel like side stitches.  Colin was camping and I was home with Cyndee.  I let her know what was going on and she kept checking on me.  The pains were becoming more frequent.  Sunday morning my parents came and picked me up and took me to breakfast.  After breakfast they dropped me off at home.  I layed down and took a nap.  I woke up and ate lunch.  I started to feel flush so I took my temperature and had a low grade fever.  I called my parents and packed a bag in case I needed it.  My mom came and picked me up.  The twins were playing football at the rec center which was on our way home so we stopped and watched them play for a little bit.  Their team was really good.   I had fun watching them.  We left the game and when we got to the house I reclined on the couch and watched tv.  I took my temp again and it was going up.  I waited a little longer and took it again.  It spiked up to 102.2 so I called my transplant coordinator.  She sent me to the local emergency room LGH.  Colin picked me up and we were taken back immediately.  I gave them the rundown of my history and Dr. Cruz's number so that they could communicate about what to do.  They sent me for a CT scan.  The doctor came in about an hour after and said that I had pneumonia and an infection.  They tried getting blood out of my picc line but there was no blood return.  They looked at the placement and the wire was inverted in my neck and flipped.  They had to give me an iv peripherally to get the antibiotics running.  The doctor from LGH called and spoke to Dr. Cruz and they wanted me transported to Pittsburgh so that they could have a handle on things.  Next thing I know, the nurse comes in and tells me that they don't want to transport me in an ambulance because it will take too long and that I am being flown to Pittsburgh in a helicopter.  About a minute later I was being moved from my bed to a gurney and was being slid into a helicopter on the roof.  It was a crystal clear sky and the moon was full.  It was a gorgeous ride.  It took about three hours to get to Pittsburgh.  The helicopter medics took me to my room and I said goodbye and got settled.  Colin drove to Pittsburgh but he had to go home and pack bags for both of us so we had something to change into since we can't just run back to the apartment.  He got to the hospital around 4.  

The doctors made their rounds in the morning.  They put me on three antibiotics and scheduled me for a picc line exchange in case there is infection in the line.  Everything else looks good with the exception of the pneumonia and the fever.  About an hour after they made their rounds I was taken downstairs to get the picc exchange.  They had to move it from my right arm to my left.  It was a quick and painless procedure.  

Today the doctors made their rounds.  All my labs are

good.  I am low on potassium so they are giving it to me in an iv.  They are going to talk to the oncologist about rescheduling my PET scan and procedure because of the pneumonia.  They are afraid to get a false reading if the pneumonia isn't gone yet.  We should know more tomorrow hopefully. I haven't had a fever since yesterday around 6pm.  I still have chest pain but it's the pneumonia.  The doctors are saying that as long as I don't have a fever today I can possibly be discharged tomorrow.  Praying for no fever and to get some of my strength back.  That would be awesome!!  I will update when I have more info.   Have a good day!!  

Friday March 31

Thursday- I was up all night between getting meds, taking my vitals and trying to be comfortable.  Bill came in around 6.  He said everything on my labs looked good.  My platelets were low so they were going to give me a unit of blood.  He said they would be back to make their rounds.  I ordered my breakfast tray and then Colin and I went for a walk to go get some hot chocolate.  We got back and my breakfast tray was there.   I had some French toast and yogurt.   

After I had breakfast the team made their rounds.  Dr. Lopez (a newer doctor to the team) made the rounds.  He confirmed me getting blood and said everything looks good and they will probably discharge me tomorrow.  I got my blood.   Walked twice more.  Had visitors for a little bit which was awesome.  My friend Patty and her husband Bill stopped after her appointment and hung out for a little bit.   Watched tv and that was about it for the day.

Friday- had a little better night's sleep:  I wasn't being interrupted as much as the previous.   Bill came around 6 again and said that everything was good on my labs and if I'm ready I can go home.  I told him I was ready to go.  He said he would get all of the paperwork together and that we could leave once all my iv antibiotics etc were done.  It took until about noon and we were discharged.  We came back to the apartment and did some packing.  Colin started packing throughout the week and had almost everything done.  It was nice not having to worry or stress over packing. He did a lot!!!   We had dinner around 6 and after dinner I went to the bedroom and laid down.  Colin checked on me a couple of times.  I finally fell asleep after 10.  I was up and down a lot which is normal for me.   Saturday is a big day for packing up the truck. I will keep you posted!

Wednesday March 28

I was up all night in pain.  The nurse was in and out all night to try and make me comfortable.  We had a rough night.  Bill came in around 6am and examined me.  Everything on my labs were good.  My mag was low so I had to be supplemented.  My face swelling has started to go down.  He told me the pain is probably from the chemo meds.  He left and said he'd be back with the team.  I ordered my breakfast and waited for the team.  The team made their rounds and Dr. Cruz said that the pain was probably from the neulesta and/or  neupogen.  He said my white cell counts are trending up.  He was happy with that.  They left and my breakfast tray was delivered.  I ate and Colin and I took a walk.  I made it halfway around and was in too much pain so we came back to the room.  As the day went on the pain was getting worse.  The nurse called bill and he came back to my room.  He examined me and set me up for a Ct scan to rule out a blood clot.  I went for the Ct scan and everything was good.  The pain is from the chemo drugs.  There's really not much they can do about it.  They are just going to treat me with the pain meds and hope that today was the worst day.  It's been a long day.  I ate dinner and went to bed.  I will keep you posted.  Fingers crossed this pain lessens and I can get out of here.  Have a good night!

Tuesday March 28

Friday - My 1 year anniversary or Birthday as they call it.  Woke up, got dressed.  My cousin Melissa came to Pittsburgh because her girls were dancing in a competition.  They were dancing at 3:00.  I hung out at the house until about 2:00.  We had lunch and I started organizing a couple of things around the house because we are going to need to start packing.  We left at 2:00 and got to the hotel around 2:30.  Gotta love Pittsburgh traffic.  It took us 30 minutes to go 7 miles. Ridiculous!!!  He dropped me off and left to run errands.  Melissa met me at the door and helped me in.  We went in to watch the girls dance.  There are so many good dancers.  It's amazing what they can do.  Madison and Mia has a duet which was pretty cool.  They did really well dancing together.  Then I watched their group dance.  Their group dance was spectacular!  They danced their butts off.  

 

It was nice to see them dance and be able to show my support and just to hang out and visit.  Colin picked me up to take me home.   On the way we decided we were going to go to dinner for our anniversary.  There's a Mexican restaurant Colin wanted to try so we found parking and went there.  The food was really good and our waitress was great.  After dinner he stopped at Pages and got ice cream for me.  It was a nice little celebration.  We got home - full of course.  I made some tea and went to bed.  It was a good day. 

Saturday- I was lazy all day.  I was tired from Friday's activities.  It was a beautiful day so I told Colin I was fine and he could go do something.  I feel bad because I can't do the things he's used to doing and I don't want him cooped up all day.  He went for a small walk and got out of the house a little bit.  I started getting joint pain so it was a little difficult to do anything.  I stayed in bed the whole day pretty much.  We had leftovers for lunch and I made casserole for dinner.  After dinner I went through a couple of the cupboards and packed some stuff up.  I did that for about a half hour and then went to bed.  

Sunday - Woke up and showered.  Colin left to go for a little hike since it was so nice out.  I made myself breakfast and then layed back down.  My joint pain was pretty bad.  I just watched tv for a couple hours.  At lunchtime I had leftover casserole.  I went back to bed after lunch.  I was dozing on and off.  Colin came home and I made mini meatloaf, mashed potatoes and cauliflower for dinner.  They were pretty good.  After dinner I cleaned up and went to bed.  Around 7:00 I took my temperature and it was 100.1.  I called the transplant coordinator.  She said to go to the ER if it gets to 101.  We took it again and it was in the 99 range.  Around midnight the pain was just awful.  I couldn't move at all.  Going to the bathroom was torture getting there.  I took my temperature and it was 100.1.  I layed there for a little while and the pain was getting worse and worse.  I yelled for Colin around 3am.  He came into the bedroom and took my temp.  It was 101.7.  He helped me get dressed.  We packed a bag and headed to the ER.  In the ER they took us back right away.  They did the usual blood cultures, urine sample and chest X-ray.  They gave me pain meds and called the transplant resident to let them know I was there.  Everything on the X-ray was good.  The blood cultures take a couple of days so we didn't have answers on those.  Urine was fine.  My heart rate was in the 120's so they put me on a heart monitor.  My oxygen level dropped to the high 80's at one point so they gave me a nasal cannula to help me breathe.  The ER doctor came and told us they were admitting me and we were just waiting on a bed.  We were in the ER room until 1pm.  They gave me a room on the 11th floor where I know and love all the nurses.  I got settled and Colin left once he went over all my meds with the nurse to make sure things were scheduled correctly and he was comfortable leaving me alone.  I took a couple of cat naps here and there.  The nurse was in and out with my meds.  The doctor requested more blood work and the nurse couldn't get blood return.  She called the iv team to come and take a look at it.  In the meantime they had to stick me with a peripheral iv to get the blood.  The IV team came and couldn't get a blood return either so she put TPA (a medicine to clear out the line).  It takes about 2 hours for it to work.  It was 2am by the time everything was done and working.  I layed down and fell asleep for about 2 hours and then the nurse came in to draw my labs around 4.  I fell back asleep for a little bit and woke up when Colin got there.

Monday- I woke up when Colin got to the hospital.  Bill came in around the same time.  He said everything on my labs looked good and he checked my face because it's swollen and my jaw and glands hurt.  He said they may do a Ct scan of it.  He marked the area with a marker to measure how big it is and to see if it changes at all.  He also checked my gtube site and said he wanted wound care to take a look at it.  He left and about an hour later the team came around.  Dr. Cruz looked at the gtube site and agreed with the wound care consult.  He said everything was good.  My white cell count is extremely low and basically non-existent so I am now on neutropenic precautions so anyone who comes in my room has to have a mask and gown. Hopefully it will start to trend upwards.  After the team left I just watched tv.  Colin watched a movie.  We didn't do much the rest of the day.  The wound team came in and looked at the gtube site.  The skin around the site is raw and broken because the stomach acid that is leaking out sits there and eats away at the skin.  She cleaned the area and fitted me with an ostomy bag.  She gave me powder and spray to use on it.  Fingers crossed it works.  Everything I eat or drink comes out the open site.  It's pretty gross and so raw that it burns constantly.  She left and Colin headed to the apartment to pack some stuff up.  I ate dinner and played on my phone.  It was a boring night.  I was really tired so I took a couple of naps.  I had a restless night but that's pretty normal when you are in the hospital.

Tuesday - Colin came in around 6.  Bill came in around the same time.  He went over my labs and said everything looks good.  My white cell count is 26 so it's on an upward  trend.  He looked at my face closely and said that the swelling went down a little but they may still do the Ct scan.  He left and the team came back around.  Dr. Cruz was happy with the upward trend in the white cell count.  I'm still on neutropenic precautions.  He told us he didn't want to expose me to the Ct because I've been scanned so much so he is just going to treat me like I have cellulitis.  They gave me several antibiotics for it.  I spent most of the day watching tv.  The wound care nurse came back and I told her the bag didn't last longer than 8 hours.  She fitted me for a different bag which I'm hoping will work.  She said she'll be back tomorrow to check on me.  Colin left around 2 to do some more packing.  I was getting horribly sharp pains so I stayed in bed.  I ordered dinner and ate.  It's been a long day and I've accomplished nothing.  I am going to get settled in for the evening and go to bed.  I hope you have a good night!!  I will post more later.  Sweet dreams!!

Friday March 24 - Happy Anniversary to Me!!!

One year ago today I received a call I never thought I would get!!!  Mary Roberts called and told me not to leave Pittsburgh for the weekend like planned and that they may have an organ for me!!!  She Called to tell us that around 8pm on the 23rd.  I was going through a mix of emotions.  We went to bed (obviously too excited and nervous to actually sleep).  Around 1:30am, we got the call to come to the hospital and

That they were going to prep me for surgery.  We called my family and let them know.  Everyone headed out to Pittsburgh to be here for me.  

We went to the hospital.  They gave me a room and prepped me for surgery.  Dr. Cruz came in and went over everything with us.  He said it would be a couple of hours until surgery and that they were sending someone to harvest the organ and make sure it was viable.  He said that there's a 50/50 chance they could transplant. My family arrived and hung out with me.  None of us got any sleep.  The anticipation of what was happening was killing us.  It was a long wait.  We waited until noon.  The feelings I was having were overwhelming.  It all felt like a dream and that it wasn't happening.  Dr. Cruz came in and told Colin and I that they were doing the transplant and that the organ is a perfect match!!!!   I said goodbye to my family one by one and Colin.  They wheeled me back and that's all I remember at that point.  

The transplant was a success.  Surgery took about 17 hours.  A few hours after surgery I had a GI bleed so they had to go back in and operate.  Dr. Cruz operated and it was successful.  

I woke up the next day in the Transplant ICU.  My dad gave me a white board so I could communicate because I couldn't talk being intubated.  The first thing I wrote was thank you.  

 

Recovery went pretty well.  I was hospitalized for about a month.  Eating my first real solid food was the best feeling ever.  Turkey, mashed potatoes and green beans.

 

When I was discharged it was surreal.  Everything felt like a dream still.  I kept asking Colin if it really happened.   I couldn't believe it.  

In the months to come I had several set backs and was hospitalized a lot.  Ironically the majority of the hospitalizations weren't transplant related.  I had a pulmonary embolism (blood clot) in my lung, PRESS (seizures), and the biggest setback is the PTLD (cancer).  We are still fighting and aren't giving up!!

I don't think I would be where I am without the support of my family and friends.  Colin has been amazing and I don't know what I would do without him.  He has been my caretaker, my rock, my sounding board, my supporter, my positive influence, my motivator, my pain in the butt at times and my love.  There's no way I would have made it through this without him. 

My parents have been supportive in so many ways.  They come to Pittsburgh as much as possible to visit and to give Colin a break.  Amber has been awesome.  She has come to visit several times and I talk to her every day.  She makes sure I'm ok and calls in the evening so I can FaceTime with Carter and Caden.  It always makes me happy to see and talk to the boys.  Shawn and Courtney have come to visit a couple of times.  We always have a good time when they visit.  He likes to spoil me.   Dana hasnt come to visit much because her job is hectic but we talk and text.  There have been a couple times where she talked me off a ledge.

Cyndee has been wonderful!  She has supported us in so many ways.  She has come to Pittsburgh to stay with me.  She even took on the burden of our monster dogs.  That was a huge weight lifted off my shoulders.  It was great knowing that they were safe and being well cared for.  She calls daily for updates and to see how I'm feeling.  Brooke and David have been great too.  They have been a huge help on so many levels.   I have the best family you could ask for!  I don't know what I would do without them.  

My friends are my family as well.  Each and every one of you know who you are.  The list that I would have to make individually would blow up my computer :) !!

My friends have sent me care packages, held fundraisers, made visits to Pittsburgh, talked me off many ledges and supported us in so many ways I can't describe it!  Thank you!!!

So.....here's to one year!!!   Cheers!!!  I can't have a drink but you can have one and make a toast to me!!!  I love you all!!!

Thank you!  Thank you!  Thank you!!

Thursday March 23

Monday - woke up bright and early and went to the Hillman Cancer Center.  Met with Dr. Redner.  He examined me and said we were good to go with the chemo.  All my labs were good.  They sent me over to the infusion center and got started.  We were there for 6 hours getting the chemo injections.  Everything went well.  They set me up with the neulesta arm band and we headed home.  We got home after dinner.  We had leftovers.  I was exhausted so I make my sleepy time tea, took my meds and went to bed.  

 

Tuesday - I woke up and was really tired and weak.  I layed around and stayed in bed most of the morning.  I got up and had sloppy joes for lunch.  After lunch I took my meds and layed back down.  I just chilled and watched tv most of the day.  I'm hooked on Say Yes to the Dress.  Don't ask me why.  I just love the show!  Colin got me up to have dinner.  He made me a chicken cordon blue sandwich.  It was delicious!!  He's a great cook.  After dinner I went to bed.

Wednesday - we got up bright and early to go in to clinic.  Feeling a little better and have a little more energy.  They drew my labs and checked everything.  All my labs were good.  I didn't need any supplements.  We talked to Dr. Cruz about my gtube site.  I am having a lot of output.  They have to go in and surgically place a clip in order for it to heal but can't do it until the chemo drugs are out of my system. He said that he would have Mary look into scheduling me an appointment for it.  In the meantime he had consulted the wound care nurse.  We also talked to him about moving back to Lancaster and he said that we could.  So....Come April 2, we should be moved back!!!  I'm so excited!!!   

The wound care nurse came and fitted me for an ostomy bag to put over the gtube site so that I'm not leaking out everywhere and it's confined.  She gave me a couple different things to try out.  She left and we were discharged.  We came home, grabbed leftovers for lunch and Colin packed and left.  He had to run home to tie up some loose ends at home before we come back.  I just put on my pjs and hung out watching tv.  I went to bed bright and early because I was exhausted from being up at 5.

Thursday- woke up, showered, got dressed.  Waited for my friend Matt to come over.  He took me to lunch at a new hibachi place I had never been to.  It was really good.  We ate and then he took me to the store for a couple of things.  We came back to the apartment and watched a couple episodes of Botched.  He left around 5.  I made myself a ham and cheese sandwich for dinner and layed down.  Colin got home around 7.  We hung out for a little bit and then I went to bed.  It was a nice chill day.  I had fun with Matt.  It was nice being able to spend time with him and relax.  

Tomorrow is a new day.  Have a good night.

Sunday March 19

Wednesday - snowed in.  Mom didn't have to work because of the snow.  Amber dropped Carter and Caden off and we hung out.  I was craving isaacs so mom took us to Mount Joy and we got Isaacs for lunch.  It was delicious!!!  After Isaacs we went to the grocery store to grab a couple of things.  The boys were throwing stuff in the cart.  Needless to say we ended up with all kinds of junk food.  It was pretty funny.  After lunch we went back to the house, I put on my pjs and took a nap.  I woke up and got ready to go to Shawns for dinner.  He came and got me around 6.  Courtney made spaghetti with meat sauce and garlic bread for dinner.  It was really good.   They showed me where they booked their honeymoon.  We found wedding invites and Courtney ordered them.  We also looked at a couple of bridesmaid dresses.  It was a pretty productive evening.  Shawn took me home.  I put on my pjs and went to bed.

Thursday - woke up, showered and got dressed.  Went downstairs and had cereal for breakfast.  Colin picked me up and took me to the health campus to have labs drawn.  We weren't there long at all.  It was quick and painless.  He dropped me back off at my parents and I did some laundry and straightened up the kitchen.  I made myself comfy on the couch and watched The Real Housewives and golden girls.  Mom got home around 3 and we ran to the mall.  We got there and she got a phone call asking her to go in to work so we left.  We weren't there very long at all.  She dropped me off at the house, got dressed and left for work.  Dad came home around 5 and I watched tv with him for a little bit.  Bobby picked me up at 5:30 so I could go watch the boys at their karate practice.  They are really good. It was a lot of fun to watch.  After karate we went to Arby's for dinner.  Bobby dropped me back off at mom's and I watched tv with dad for a little bit.  I got ready for bed and was asleep by around 10.

Friday - the twins didn't have school and Amber had the day off so we went to Oregon Dairy for breakfast.  The boys love buffets and I can't eat at a buffet so we went there because they have a regular menu you can order off of as well as a huge breakfast buffet.  We ate breakfast and then went to the mall.  I got a purse backpack because my purses are difficult to carry right now.  It's really cute.  It's pink, teal and brown with little owls on it and it was only $10!!!  I also had a little mishap with my suitcase and the zipper ripped so we went and looked at the luggage.  I scored a decent suitcase with spinner wheels for $29!  Each piece of the luggage in the set was 29.  I got the mid size one.  I need a decent suitcase since we will be doing a lot of back and forth traveling to Pittsburgh since we will hopefully be moving back in April.  Mom also got me a nice water bottle that is no spill.  It was on clearance for $1.99.  It was a very productive trip.  Amber even scored some jeans cheap and got Bobby a St Pattys Day tshirt.  We left the mall and went back to mom's.  Jen, Bill and Ally flew in from Florida and were at the Hager's so I had mom drop me off so I could visit a little bit.   She took the boys bowling and I hung out with Mehgan and Jen and everyone for a couple of hours.  Mom picked me up and we went to The Dollar Tree because the boys had "dollars" they wanted to spend.  It was dinner time so mom called dad to see if he wanted something for dinner.  He wanted Burger King so we went through the drive through and headed home.   We ate dinner and set up the dining room table in the kitchen so we could play ping pong.  The boys found paddles in the garage and we bought balls when we went to the store the other day.  They played ping pong for about an hour.  I played a little bit.  They were funny.  They would yell at me if I tried to pick the ball up if it fell.  They would tell me to wait and they would go get it for me.  They are so protective.  After ping pong I was getting really tired.  We went to the living room and watched The Little Rascals.  About halfway through the movie I went to bed.  Carter and Caden slept on the couch in the living room.  

Saturday - Caden snuck into my room around 7 and asked if I was going to come have breakfast with him. I got up and ready and went downstairs.  We ate breakfast and played for a little bit until Amber and Bobby came to pick them up.  I have been having a lot of leaking on my g tube site and needed some more dressings so I asked amber to take me to Kmart to see what they had.  We looked in the first aid aisle and there really wasn't much that would work like I need it to.  We went to the baby aisle and got some diapers.  I figured it was worth another shot.  We left Kmart and she took me home.  I got dressed and ready because Amanda's parents were coming to get me for the twins 2nd birthday party.  They picked me up a little before 11.  She had a Sesame Street birthday party.  It was a lot of fun and a little chaotic.  They had really gone all out with the theme.  It was really cute.  The twins opened their gifts, we ate lunch and then they had their cupcakes.  They were a mess!  After cake they went upstairs for their nap.  I got ready, said my goodbyes and Butch took me back home.  When I got there dad was watching tv.  I sat on the recliner and relaxed.  I took a little cat nap.  Around 4, I got ready and dad dropped me off at Mehgan's so we could go to dinner.  I hung out at Mehgan's until it was time to leave for dinner.  It was nice catching up with Jen and Bill too.  I hadn't seen her in forever.  I miss my girls!!!  

We left and went to dinner.  We went to JB Dawson's.  I had potato soup and a pork BBQ sandwich.  It was really good.   We sat and talked and got caught up for a few hours.   After dinner they took me home.  We had a nice visit.  We said our goodbyes and they left.  I put on my pjs and hung out with mom and dad for a little bit.  I went upstairs and got everything packed up and ready to leave in the morning.  I went to bed.

Sunday - woke up before 6.  Took my meds.  Got showered and dressed.  Gathered up my last minute things and went downstairs.  Mom and Dad woke up and we watched tv until Colin came to get me.  We went to Park City Diner for breakfast with Brooke, David, Max, Grayson, Libby, Cyndee, Quinn, Phenix and Ireland.  It was nice to see everyone and hang out before we hit the road.  We left directly from breakfast and headed back to Pittsburgh.  The drive was ok.  We hit a lot of traffic.  There were police everywhere on the turnpike.  I've never seen so many in all our travels.  We made it to Pittsburgh before 2.  We got home, unpacked and got everything ready for my chemo appointment Monday.  Colin ran to the store to get me orange juice and milk.  He picked up sandwiches at UNO for dinner.  We had dinner and I layed down and chilled out for a little bit.  I got out of bed, took my nighttime meds and went to bed.  Tomorrow is Monday.  I have my 6th and hopefully last chemo treatment.  Keep me in your prayers that I will be cancer free after this!!  I will post more later.  Have a good day!!

 

      

Tuesday March 14

Monday morning we were up bright and early to go in to 7West (clinic) for my labs and a check up.  We got there at 6.  My friend Patty and her husband got there the same time we did.  We were taken back to a room and Patty was put in the room next to us.  They drew my labs and Bill came in to check on me.  When the labs came back I was low on mag so they gave me iv mag which runs over two hours.  I also needed a pantanomine breathing treatment so they gave that to me as well.  While I was waiting I kept going over me visiting Patty next door.

The doctors made their rounds and said everything looked good.  He said we don't have to go back until next Wednesday since chemo is on Monday.  We had packed up the car on Sunday in preparation to head to Lancaster on Monday if given the ok.  We were given the ok so we left the hospital and hit the road.   

The ride was pretty quick and painless.  We stopped once and grabbed lunch and went to the bathroom.  We got in to Lancaster a little before 3.  I am staying with my parents.  My mom was working so I hung out with my dad until bedtime and I put on my pjs and went to bed.  Nothing too exciting.

Today I woke up, took my meds, layed in bed for a little bit.  I got up and showered and went downstairs and made breakfast.  Lancaster was hit with a snow storm.  Not as bad as they were calling for but there's about a foot.  Dad went out and was snow blowing the driveway.  Mom and I stayed in the house.  She made peanut butter Tandy cakes and got meatloaf ready for dinner.  We watched tv for a little bit and then put in a movie.   We watched Manchester by the Sea.  It wasn't what I thought but it was a good movie.  After the movie mom took a nap and dad and I watched tv.  He put dinner in and we had meatloaf and mashed potatoes.  It was pretty good.  I was really looking forward to it.  After dinner we put in another movie.  I'm watching it now.  I think it's War Dogs.  So far I'm not impressed but I'll finish it and see if I change my mind.  I'm heading to bed after the movie.  Have a good night!!  I'll post more later.  

Sunday March 12

Wedynesday- was up bright and early.  Had a pretty sleepless night.  I was having a lot of back pain.  Colin came in around 6 and brought me a yummy hot chocolate.   

Bill wandered in around 7.  My labs all looked pretty good.  They needed to give me iv antibiotics and also some replacements.  He said I was probably going to need a unit of blood as well but he wanted to check with Dr. Cruz to be sure.  He left and I ordered my breakfast.   I changed it up a little and had pancakes.  A little after breakfast the team made their rounds.   Dr. Cruz said that he wanted to give me a unit of blood and the antibiotics but after that was all done we could be discharged.  That was exciting news!!!  Colin and I worked on some stuff on the computer for the golf tournament.  We are trying to get a head start this year.  It kept us busy until we were able to be discharged.   My Iv's weren't done until around 4 so we didn't get out of there until close to 5.   We came home, I put on my pjs, we ate dinner and I went to the bedroom to lay down.  It was a long day but well worth it to be able to sleep in my own bed.

Thursday - I slept pretty decent.  I was having a lot of pain, but managed the best I could to get through it throughout the night.  I cocooned myself in my heated blanket and that helped a little bit.  

I got up and showered and dressed.  Colin left and went for a walk because it was pretty nice out.  I didn't really do much of anything.  He got home and we ran to the store to grab a couple of necessities but didn't get much because we are hopefully going to be able to make a trip home for the weekend if clinic goes well on Monday.  I spent the rest of the day in my pjs laying in bed.  I did some laundry and organized my closet a little bit.  Other than that it was a pretty uneventful day.  I went to bed around 8 and fell asleep pretty early.  

Friday- Slept pretty decent.  I fell asleep around 10 and slept straight through until about 4 which is pretty good for me.  I got up and showered and dressed.  I wanted to get out of the house so I convinced Colin to take me to the outlets to walk around and get some fresh air.  He agreed and we left and headed to the outlets.   We walked around and got away with not buying anything.  It was a nice walk but got really cold and started snowing.  We left and stopped at Waffle House for lunch on the way home.  I can't say I've ever been to a Waffle House.  I had a peanut butter waffle and hash browns and Colin got eggs and hash browns. No meat for lent.  It only cost $15 for everything and we had leftovers.  It was a pretty good deal and the Waffle I had was amazing.  We left there and went home.  I put on my pjs and took a nap.  We had leftovers for dinner.  I was in bed by 8.  I was really tired.

Saturday-  Woke up early.  I didn't sleep well at all.  I didn't fall asleep until about 4am.  It was a pretty rough night.  Colin left early and went for a walk.  I stayed in bed til about 9 and got up, showered and dressed.  I put on another pair of pjs and got motivated.  I made sloppy joes so we had them for lunch and marinated some chicken breasts to prep for dinner.   We spent a couple of hours organizing and packing some clothes so we can hopefully be moved out of here by mid April.  We are hopefully heading back to Lancaster for a visit this week.   We made dinner.  Italian marinated chicken breast sandwiches.  They were pretty good.  We had asparagus and broccoli cheese noodles too.  After dinner we went through the next two weeks and layed out all my medicines.  It took a little while to do it.  After, I layed down and went to bed. 

Sunday -I slept a little better last night.  I was up bright and early.  Colin got up and went for a walk.  He came home and I got up and motivated.  Colin cleaned the house and then dropped me off at target so that he could vacuum and dust.  He doesn't like me in the house when he is vacuuming because of the dust particles.  He came and picked me up.  He brought me home.  We had leftover sloppy joes for lunch.  After lunch Colin left to run errands.  I watched tv and waited for him to come home.  He came home and we left to go grab dinner.  We don't have a single thing in the refrigerator.  We are trying to keep things to a minimum.  We still have some Cheesecake Factory gift cards so we went there for dinner.   Let me tell you.....completely disappointed!!!  We ordered an appetizer.  It came out right away.  We ordered dinner. Colin ordered shrimp tacos and I ordered chicken enchiladas.  It took about 45 mins and the waitress finally came over and said that they burned the shrimp so they were making more and she was sorry about the wait.  Our food came about 20 minutes later.  My enchiladas were dry and tasted burnt.  I told the waitress and she took the food back.  I waited about 15 minutes longer and they brought me a new plate.  They weren't very good.  I was seriously disappointed in my meal.  Colin wasn't thrilled with his either.  Every time we have eaten there in the past we have been extremely happy with it and had no issues.  I usually love my food.  Maybe they were just having a bad day or maybe it's just what we ordered.  We left dinner and came home.   We packed up our bag and got ready for clinic tomorrow.  Hopefully all my labs are good and they give us the ok to head back to Lancaster for a few days.  Fingers crossed!!  I will post more later.  Have a good night. 

Tuesday March 7

Friday - I was having a lot of pain in my leg and hip so I stayed in bed all day.  We thawed some chili we had in the freezer and I made some cornbread muffins and that's what we had for dinner.  Lunch was leftovers.  Colin spent the day doing laundry.  For two people we make a lot of dirty laundry.  That was our exciting Friday!  

Saturday - I was feeling a little better and it was a beautiful day except for the high of 30 temperature.  I got showered and dressed and we decided to go to the outlets to walk around.  They have really nice outlets here.  I was excited to get out of the house.  We bundled up and went to Tanger.  It is so much nicer than the tanger outlets in Lancaster.  Colin pushed me around in the wheelchair.  We spent about two hours browsing and looking around.  They have different stores then we have at our outlets.  We left the outlets around lunchtime so we stopped at Kings Restaurant to grab a quick, inexpensive lunch.  I see commercials for them all the time and have never been to one.  It was kind of like a Denny's.  I ordered pot roast and Colin had a Cobb salad.  Mine was really good.  I had a lot left over.  We ate and headed back home.  We got home and I was starting to have pain again so I put on my pjs and relaxed.  I ended up getting out my heated blanket because I was freezing.  I cocooned myself in the blanket and watched the Say Yes to the Dress marathon.  I'm hooked on that show!  We had leftovers for dinner and I went to bed.  

Sunday - I woke up in a lot of pain.  I showered and changed into a different set of pjs.  Colin left to run some errands and I took a nap.  He got home and we watched tv.  I started to feel hot and cold so I took my temperature.  I had a fever of 100.7.  We waited about an hour and took it again.  It went down a little to 99.7.  We waited another hour and took it and it was 101.7.  We called the coordinator to let her know and see what she thought we should do.  She told us to go to the emergency room and that they needed to draw blood cultures to rule out infection.  It was about 5, so we ate dinner, grilled cheese and potato soup and got ready to go to the hospital.  I packed a couple outfits because I had a feeling they would keep me.  We left and headed to the ER.  The coordinator called to let them know we were coming so when we got there they took us to a room almost immediately.  The ER doctor came in and ordered the blood work and a chest X-ray.  The on-call small bowel resident came to see me and said they were going to admit me for observation.  They got me a room and got me settled.  Colin went home and I went to bed.  

Monday - Bill came in in the morning and said they were going to send me for a Ct scan of my face and an MRI of my back.  The Ct scan of my face is because I have what started as a pimple and swelled up my entire cheek and eye.  They think there is some sort of infection going on.  The MRI of my back is to see if the fracture on my sacrum is healing or if something else is going on causing all my pain.  He checked my g-tube site and changed the dressing.  He left and I ordered my breakfast.  I had a bacon egg and cheese English muffin.  Hospital food is the greatest. (Sense my sarcasm).  Dr. Cruz and the team made their rounds and he confirmed what Bill told me.  I also needed some replacements.  My potassium was low and so was my mag.  He also put me on Iv antibiotics to try and knock out any source of infection before it gets worse.  My white cell counts were really low so they put me on neutropenic precautions.   That basically means anyone that comes into my room has to wear a mask and gown.  The team left and I layed in bed.  They came and got me for the Ct scan in the morning.  It was quick and painless.  They brought me back to my room and I layed in bed.  Colin and I just hung out most of the day.  Bill stopped back in to let us know the results of the Ct scan.  He said it's cellulitis on my cheek which basically means infected tissues.  He ordered an ointment to put on it and said we are going to continue the antibiotics.  He also told us that the blood cultures were negative which is a good thing.  Colin left around dinner.  The nurse came in around 5 and said they were going to come soon to take me for the MRI.  They came and got me around 5:30.  The MRI was about an hour and a half.  I was so tired from not sleeping the night before that I actually fell asleep.  Not sure how with all the loud grinding and cluncking noises.  They gave me earplugs so it helped.  I got back to my room around 8.  When I got back I smacked on some cheese curls Colin had left and layed down.  I missed dinner.  It was too late to eat anyway.  The nurse came in finally around 8:30 and gave me my meds.  A lot of them were wrong.  I went over everything with her and she gave me the ones I needed.  She came back in an hour later and gave me my 8:00 meds.  At this point it was after 11:00.  She hooked me up to some antibiotics via iv and was in and out of my room most of the night with different things.  In the morning she gave me my 6am meds but only gave me 2.  When I asked her about the other ones I needed to take she told me she would let the day nurse know.  She was probably one of the laziest nurses I've had.  She basically blew me off and wouldn't change the times in the computer and left it for the poor nurse who was coming in.  I told Colin about it when he came in.  He wasn't very happy.  When the day nurse came in to evaluate me, we told her what happened and she was wonderful.  She sat with Colin and went over everything.  She changed all the orders in the computer so they were correct.  She took her time to make sure everything was right.  

Bill came in to my room bright and early.  My white cell counts are trending up so as long as that keeps happening I may be discharged on Thursday.  He said they are going to continue the antibiotics and see what tomorrow's labs show and we will go from there.  Dr. Cruz and his team came around about an hour later and  said pretty much the same thing Bill had already told me.  The MRI results still weren't back yet so he said they would let me know as soon as they had the reports.  They left and Colin and I watched tv.  Nothing too exciting.  A little after lunch Colin saw Bill and he told him that the MRI shows the fracture is still in my sacrum but is healing.  It looks a lot better than the MRI they did if it in December.  It is just taking longer to heal because of the chemo drugs and the steroids.  Once the chemo is done and out of my system, things will start to heal faster.  The steroids are still going to effect the healing process in my body but not as bad.  Bill told Colin that a lot of the pain I'm having is from the neulesta and neupogen and that I'm going to be weak and in pain as long as I'm getting the chemo drugs.  Hopefully we only have one chemo treatment left and everything will be in the clear.  Then I will finally be able to start healing and be on the road to a healthy life again.  Colin left after lunch to go home and clean up.  I stayed in bed and watched tv.  I also spent some time researching wedding stuff for Shawn and Courtney.  It gave me something to do.  Around dinner the nurse unhooked me from everything and I showered.  It felt so good!  I hadn't showered in two days because I was on a heart monitor.  After my shower I had my lovely hospital dinner comsisting of chicken noodle soup and buttered noodles.  

 

Looks delicious doesn't it!!!

After dinner I got into bed and chilled out.  I'm in bed now watching tv and chilling out.  My nurse today was awesome.  She was on top of everything and was pleasant and knowledgeable.  She was a breath of fresh air compared to the nurse overnight.  I didn't have to wait for anything and she answered my call bell immediately every time I pushed it.  It's 7 now so she's going home for the day.  I hope that I have a better nurse tonight.  We will see.   

I have to say.....chemo affects people differently and there is a wide array of side effects.  I feel like I am extremely lucky because I haven't had too many side effects.  There are people who are extremely nauseous and have bouts of vomiting etc.  I have heard horror stories of side effects from chemo.  There are people who get so sick they live in their bathrooms because as soon as they move they get sick.  There are others who are in so much pain that they can't function or do normal daily activities that we take for granted.   I feel blessed that God has helped me through this and know that I could have it much worse.  I can get through this and will get through this.  I believe that my faith and prayer will help me through.  I pray for those who are extremely ill and have horrible side effects from the treatments.  It is a horrible feeling.  

I am going to bed now.  Please take the time to say a little prayer for me and for those who are undergoing treatment and need the support.  I will update you later.  Have a good night! 

Thursday March 2

Can you believe it's March already?!?!   It's crazy how time flies.  It's almost going to be a year since my transplant.  I'm so blessed to have been able to come this far.  It's amazing what my body has endured and I have God to thank for that.  He has definitely tested me but guided me through as well.  

Yesterday I went to 7West in clinic.  Everything looked good on my labs.  Dr Gonoza was happy with everything and I didn't need any supplements.  The main problem I'm having right now is my back, hip and leg pain.  He is going to have me consult with an orthopedic doctor to see what is going on.  They are supposed to schedule an appointment and get back to me.  Hopefully that will give me some answers.  After clinic we headed home and had lunch.  I made buffalo chicken sliders.   They were really hot.  I added lots of blue cheese to mine to cut the heat.  

After lunch I layed down for a little bit.  I got out of bed around 4 and showered.  We went to the book store to get out of the house for a little bit.  We came back home and I got ready for bed.  We layed out all my medicines for the week and I went to bed.

I had a pretty sleepless night last night.  I was having a lot of pain and was uncomfortable.  Today is just going to be a lazy day.  I'm having pain and am going to try and take it easy to hopefully illeviate the discomfort somewhat.  They changed a couple of my meds and have me wearing a lidocaine patch 12 hours out of the day.  We are hoping it will help.  I'm just starting it today.  They also have me wearing compression socks because I'm so swollen from the steroids.  It's crazy the side effects medicines can have.  Ive gained a lot of weight from them and everything I've read about it basically tells you there's not much you can do.  It's really frustrating because I don't have the energy to exercise and until we know what's going on with my pain they want me to keep activity at a minimal so I don't cause more damage.  Hopefully we will know more soon.  

I'm going to lay down now and try to take a nap.  My evening is going to consist of making hamburgers for dinner and going to bed.  I hope you have a good rest of your day.  I will post more later.  

Tuesday February 28

Chemo went ok on Monday.  It was a very long day.  We got home a little after 4.  We were both exhausted so we ordered a pizza and relaxed and watched tv.  I went to bed around 8.

Tuesday was a lazy day.  Colin went out in the morning and ran a few errands.  I stayed home because I was having a lot of hip, back and leg pain.  I layed around all day and didn't do much.  I got up and moving around 3:30 and got dinner together.  I made lasagna with garlic bread.  It was pretty good.  I made it a little healthier using fat free cheeses and whole grain noodles.  After dinner we realized it was fascnaught day.  Colin ran to the store to get fascnaughts but apparently they don't know what they are in Pittsburgh so we had to settle for their version which they call paczkis.  Basically a filled donut.  We shared one for good luck.  After I cleaned up the dinner mess I did some laundry and went to bed.  Have to be up bright and early for clinic in the morning.   I will post an update later.  Have a good day!!  

Monday February 27

Thursday - Thursday afternoon Colin's dad, Tom came to visit me and took me to lunch.  We went to Isaacs.  I had tomato soup and a salty eagle.  A salty eagle is ham and cheese on a pretzel bun with honey mustard.  It was delicious!  We sat and talked for a while and caught up.  After lunch he dropped me off at Cyndee's so I could hang out with the dogs for a little while.  They are being fostered for a few weeks by a friend.  She is a lifesaver and the most selfless person you will ever meet.  Jessica met me around 2 and picked up the dogs.  They were happy to see her.  After that mom picked me up and took me back to her house.  I went back and relaxed.  We had dinner and went to Carter and Caden's basketball practice.  After practice Amber stopped and we hung out for a little bit.  The boys ate dinner and they left around 8.  I went to bed.

 

Friday- I woke up and Dana picked me up and took me to breakfast.  We sat and talked for a while.  After breakfast she took me to Columbia river trail where there are a bunch of hiking trails and biking trails.  They have a beautiful lookout and a really nice visitors center.  We sat and watched the birds for a little bit and walked through the visitors center.  They had a bunch of art work from local artists so we walked through and checked it out.  She took me home around lunch time.  She stayed and hung out with me at my parents for about an hour.  She left and I relaxed.  

 

I had dinner plans with Cyndee, Quinn and Phenix.  Cyndee picked me up at my parents and we went to BJ's Restaurant.  I had never been there before.  It's bar type food.  I had a pork BBQ sandwich and broccoli cheddar soup.  It was pretty good.   We had a nice time visiting and I got to see Ireland.   She's the most adorable little girl ever.  She started to get a little antsy but that's what happens when you are one.  I gave her her birthday present at dinner.  It was a cute little book about dancing.  It kept her occupied for a little while at least.  After dinner Cyndee dropped me back off at home and I went to bed.  It was a nice relaxing day for the most part.

Saturday - woke up early and got dressed.  My cousin Melissa and her daughters Mia and Madison were in Lancaster for a dance competition.  Amber, mom and I went to watch their solos.   They looked so beautiful and were so good.  They both won scholarships!!!  It was awesome to watch.   

After dance we headed to the soccer field.  Carter and Caden started indoor soccer and it was their first practice.  We stayed and watched the whole time.   They are very good at sports.  It was nice to be able to spend time with them and watch them play.  After practice mom and I stopped and grabbed lunch at Two Cpusins and got some cupcakes from Lancaster Cupcakes.   We took them home and met Dad, Shawn and Courtney.   We ate lunch and then Mehgan came over with baby Ellie!!   She's such a good baby and so adorable.  It was awesome getting to spend time with them.   I miss Mehgan a lot.  It's hard to catch up with them living in West Chester and me in Pittsburgh.  I can't wait until I'll be home to spend more time with her.  She stayed a couple of hours and we all hung out and chatted.   Amber stopped to see the baby too.  

 

 

While we were visiting all of our phones started beeping and sending warnings because there was a really bad storm and a tornado warning.  Mehgan packed up quickly and left so she could beat it.  Luckily she made it home before the storm hit.  It was pretty bad.   There was a lot of hail and really strong winds.   Amber made me go in the bathroom and hide. We were joking that I have cheated death several times and am finally on the upswing.   Wouldn't it be something if after all I've been through I would die in a tornado.   At least we can try to find the humor in those type of situations.   

Colin came over around 5 and took me to Jeremy and Janel's house for dinner.   They invited us over for fajitas.  We had dinner with them, Mason, Bernadette, Justin and Grant.  It was my first time meeting Grant.  He's a big boy.  He and Mason are a couple of days apart and they are so adorable!!  Both of them are happy babies.  They ate their dinner with us and played for a little bit.  Dinner was delicious.   Janel is a very good cook.   We had a nice time and were able to relax and visit.  Colin took me back to my parents after dinner and I sat with mom for a little bit and then went to bed.

Sunday morning I woke up early.  Got all of my stuff together to come back to Pittsburgh.  Amber came over with the boys to say goodbye.  Colin picked me up and we headed to Gus's for breakfast with Sean and Jamie and the girls.  It was a nice breakfast.   We stayed a little while and talked and visited.  On the way out, we saw my friend Kelly and her daughter Emma.  They were selling Girl Scout cookies in the lobby.  We bought three boxes of cookies and left to head back to lovely Pittsburgh.  We were on the road by 10.  The drive was easy.  Uneventful and not many cars.  We made it back to the apartment around 1:30.  We unpacked and I layed down.  My back, leg and hip are killing me.  I relaxed for the evening, packed up my stuff for something to do when I'm at chemo and went to bed.

Monday- today is chemo day.  I'm going to be here all day!  We met with Dr. Redner this morning and he said that I will have this session of chemo and then one more the third week in march.  After the 6th treatment they will do another Pet Scan and we will go from there to see what the next step is.  I will post more later and update.  Have a good day. 

Thursday February 23

Wednesday was a normal hospital day.  Not too much to report.  They gave me over meds to stay on top of the my pain and I colored.  I took a couple of walks down around the nurses station.  That's about it.  

Thursday was the same.  Woke up after a night of trying to get comfortable.  The docs made their rounds.  All my labs were good again and they said I could go home.  Just have to try and get this pain managed and under control.  We were discharged and headed home. As soon as we got there I went to bed and relaxed.  Colin made dinner.  We just hung out and went to bed.

Friday was a lazy day as well.  We went to the store and picked up a few things and spent the rest of the time hanging out.  I colored a little and we watched a movie.  I made lunch and then dinner and went to bed fairly early.

Saturday we went to Dicks and walked around a little for some exercise.   We ran to Gander Mountain for something to do as well.  We grabbed a quick lunch and went home.   We made dinner and watched tv.   Again.....nothing too eventful.  I went to bed fairly early.

Sunday we woke up, showered and got dressed.   We met our friend Matt at Target.  We stopped and grabbed a quick lunch at a sandwich shop across the street from target and then headed to the Ross Park Mall.  It's kind of like King of Prussia but not as big.   They have a lot of high end stores.  Matt and Colin took turns pushing me in my transporter.  Matt was shopping for stuff for his apartment.  Colin and I just went along for company.  It was nice to get out and have a change of scenery.  We didn't buy anything just browsed.  After we were done we went home, made dinner and watched tv.  I went to bed fairly early and just relaxed.  It was a pretty nice day.

Monday was a holiday.  We didn't do much.  My hip and leg were really bothering me so I stayed home and relaxed.  I paid some bills and straightened up the desk.  I cleaned out the fridge and went through some of my clothes.  Colin went golfing in the afternoon because it was so nice.  It was good for him to get out of the house.  I made Salisbury steak for dinner and when he got home we ate and watched tv.  We went to bed early because we had clinic in the morning.

Tuesday we got up bright and early and headed in to clinic.  They drew labs and did my blood work.  Everything looks good.  I didn't need any replacements and Dr. Cruz was happy with the way everything looks.  The pain in my hip and spine is excruciating at times.  He is thinking of doing another MRI to check and see if the fracture has gotten worse or what's going on in there causing so much pain.  He told me not to be a hero and to use my walker again if I need it.  So.....I'm back to using the walker.  It's helping a little with stability when I'm walking.  The pain just hits me out of nowhere at times and it's really frustrating.  I'll get through it though!

While at clinic we asked if we could travel to Lancaster for the weekend since I have chemo Monday and we won't be able to go home for a couple of weeks and he said that we should and it will be good to get away.  After clinic we went back to the apartment, cleaned up, packed and hit the road to head to Lancaster!!  We were on the road by 2 and made it to Lancaster in just a little over three hours.  We made really good time and only stopped once.  Colin dropped me off at my parents and I met Amber, Bobby and the twins for dinner.  After dinner she dropped me off and I went to bed.

Wednesday morning I met Amanda for breakfast.  We sat and talked for a while.  It was great catching up.  After breakfast she dropped me off at Kelly's so I could visit and see the baby.  We went to the park for about an hour to run some energy off of Thomas.  He's such a good big brother.  He's getting so big.  Baby Andrew makes him look like a giant😀.  We went back to Kelly's house and Matt's parents came over to visit.  Janet and Joe are amazing parents, grandparents and wonderful people in general.  They are always checking in on me and are always keeping me in their prayers.  I love them to death!!   They left and my mom picked me up.  We ran a couple of errands and then got Sonic for dinner.  Everyone is taking me out to eat while I'm home!!  It's been nice because I'm going to restaurants that we don't have in Pittsburgh that I miss!  Shawn came over and we ate dinner.  After dinner we went to the boy's basketball practice at the school.  It's fun watching them play.  They are really good for being so young.  We got home and Amber came over with the twins.  We hung out for about an hour and they went home to get their homework done and get ready for school.

 

 

 

Today is Thursday.  I was up early and am waiting for Tom to pick me up.  He's taking me to lunch today so we can catch up.  I haven't seen him since Christmas so it will be nice to catch up.  I will post more later.  I hope you have a good day!!  I'm happy to be home!!

Tuesday February 14

Happy Valentine's Day!!!!

 

I can't believe it!!!   Colin proposed to me 10 years ago today!!!  10 YEARS!!  It has been a roller coaster but we always seem to figure it out.  The past few years have been stressful and have put a huge strain on our relationship.   It has made us stronger as a couple and our love for each other has grown and blossomed more than I could ever have imagined.   Colin Carlock- you are the love of my life and I couldn't imagine sharing it with anyone else.   I love you with all my heart!

So....for my update:

Saturday- we woke up and went to the grocery store.  After the store we went to Golf Galaxy.  Small field trip.  We got home and I had leftovers for lunch.  After lunch I layed down and watched tv.  Our friend Josh was stopping to visit on his way to a work trip in Kentucky.   He got to the house around 1:30.  When he got to the apartment, he and Colin left to go grab lunch and hang out for a little bit.  I stayed home and watched tv.  They called me around 5:30 and said they were on their way to get me and we were going to dinner.  I got dressed and we headed to dinner.  They were on a 1 1/2 hour wait.  We walked over to REI and browsed.   It killed about 45 mins of our wait.  Then we walked across the street to Hofbraus, a brewery.  We watched the guy playing the accordion and some dancers.  It was a pretty cool place.  We stayed about a half hour and went back to Cheesecake Factory.  We got there and only waited 5 minutes and our table was ready.  We had a nice dinner and even got some cheesecake to go.  (Dinner and Cheesecake were free thanks to the gift cards I got for Christmas). We went home and I went to bed.  The guys stayed up and hung out for a little while.  Throughout the day I was starting to get hip pains and my body was aching.  

Sunday- we woke up and got ready.  Josh wanted to get an early start on his drive so we went to Waffles Incaffinated for breakfast before he left.  It was really good.  After breakfast we went back to the apartment and Josh headed out.  My pains were starting to act up more and I was having a little trouble getting around.  I  decided to make potato soup to keep me busy and out of bed.  I also cleaned and cut up the fruit we got at the store.  I like to do it that way so you can grab and go as apposed to cleaning and cutting it up as you are hungry.  We ate leftovers for lunch and I layed down because I was in pain.  I buried myself in my heated blanket with the hope that the heat would help.  I got out of bed around 5.  We had more leftovers for dinner.  After I ate I went back to bed.  Around 8 or so I was really in a lot of pain.  By 10, I could hardly walk to the bathroom.  I was in tears.   Around midnight Colin came to check on me and I was still in tears.  He told me to call the coordinator so I did.  She sent me straight to the er.  We headed to the hospital.  We got there and were taken to a room right away.  The nurse and doctor came in right away.  They gave me pain medicine and told me I was being admitted.  They were just waiting on a bed.  

Monday- We waited until about 12 on Monday until a bed became available.  I was taken to my room and got

settled.  My day was pretty boring.  I took a bunch of little cat naps.  Bill came in to see me and put in the orders for pain meds and my daily regimen of pills.  Colin left after Bill came in because he hadn't slept at all because he was up with me in the er all night.  I just stayed in my bed and watched tv.  

Tuesday- Woke up and was still having a lot of pain.  Bill and Bonnie came in around 7 to check on me.  They said my white blood cell count was trending up on its own and as long as it stays on that trend I won't need a blood transfusion.  So that's positive.  They think the pain is from the neulesta shot I got after chemo.  It is a common side effect.  I just hung out in my room for the day and pretty much did nothing.  We had lunch and I got "showered".  Colin left around 3 to beat the traffic and do some laundry.  I am in bed watching tv and playing on my phone.  So exciting!!  Hopefully tomorrow will be better and I can get a little bit of sleep tonight.  I will post more on my progress later.  Have a good night!!

Friday February 10

Got up early and went in to clinic.  Stopped on our way in and grabbed donuts for the nurses.  Got to clinic and they drew my labs and did blood work.  Dr Cruz made his rounds around 8.  He said everything looks good.  My white blood cell count is still in the positive.  My G Tube still hasn't healed over yet.  It's leaking a lot.  I have to have lots of gauze and a bath towel folded over under a binder to hold it all in place. It's been four weeks since they removed it and it should be healed over by now but it's not.  He's going to contact a gastro doctor to do an endoscopy and go it and surgically insert a clip to help it close up.  They think it isn't closing because of the chemo and the steroids.  They both make it harder for your body to heal.  He wants to see us back on Monday.  

After clinic we stopped at target to get my prescriptions and headed home.  We had leftovers for lunch and watched Ghostbusters.  After lunch I did some laundry and Colin scrubbed the floors and the bathroom.  I layed down until dinner and chilled out.  My body is aching today.  Not too bad but enough to be uncomfortable.  I'm also feeling pretty weak.  We cleaned out the fridge and had leftovers for dinner.  After dinner I went in to the bedroom again and layed down.  

I'm hoping to get some sleep tonight.   I didn't sleep well last night so hopefully it will all work out.  I will post more later.  Have a good night!!!