Sunday January 29

Thursday was uneventful.   We went to Cosco and grabbed a couple of things.  I layed down around 2 and took a nap.  I slept until about 3:30 and got up to make dinner.   After dinner I went to bed.   

Friday we had to be at clinic early.   We got there about 6.  They drew my labs and did bloodwork.   The doctors made their rounds around 10.   Dr Cruz said everything looks good on my labs and was really happy with how I look.   We even went down on the dosage of my pain patches.  I'm slowly trying to wean myself off everything.  He discharged us and we headed home.   Amber, Bobby, Carter and Caden were coming for the weekend so we went home and got ready for them.   Colin cleaned the house and did laundry and I took a nap.  Amber left after the boys got off the bus around 4.  They got to the apartment around 8.   Bobby and Colin went out for a little bit.   Amber the boys and I had snacks and watched tv.   I went to bed around 10.   

We woke up fairly early Saturday.   We made pancakes, eggs, bacon and sausage for breakfast.  After breakfast we went to the Heinz History Museum in Pittsburgh.  They had a football training camp event that was really cool.  They had games, activities, cooking classes, football drills and so much more.   We had a really good time.  

 

 

 

 

 

 

Some pics from the museum.

After the museum the boys wanted to go to Dave and Busters for lunch and so they could play.   We went and had lunch and they played games for about an hour.   They had a lot of fun.  

 

 

 

We went back to the house and relaxed for the rest of the afternoon.   We had dinner reservations for 6:30 at Yokoso which is a hibachi restaurant in town.  We chilled out and watched a movie until it was time to leave for dinner.  

 

Carter goofing around in mommy's boot.

Dinner was really good.   Carter was afraid of the fires at first but got over it fairly quickly and started to actually enjoy it.  

 

We came home from dinner and played battleship.  We watched a movie, layed down and went to bed.  It was a great day!!!   I had so much fun with the boys and I was able to enjoy myself.

We woke up Sunday.  Amber and Bobby loaded up the car.   We went to IHOP for breakfast.   They left directly from breakfast.  They were on the road by around 10.   After breakfast Colin took me to Cvs to get a cane.   I upgraded from my walker.  I got a pretty teal blue cane.   It's definitely a lot easier to maneuver than the walker and is a lot less cumbersome.  Colin dropped me off at the grocery store after cvs and he ran home to vacuum since I can't be there when he does.   I got through the store and he picked me up.

We came home.   I made lunch.   We watched tv and did laundry.   It was a lazy uneventful day.  We ordered a pizza for dinner.  I went to bed around 6.  I sat in bed and colored for a few hours.  I was asleep by 10:30.  Not sure what today will bring.  I will post more later.   Have a good day!!

Wednesday January 25

Woke up this morning.   Feeling pretty good.   Hung all my iv antibiotics and took all my morning meds.   Colin left early for an appointment.   I waited for him to come back.   We made a grocery list when he got home.   I got dressed and ready for the day.

We got in the car and went over to Victoria's Secret because I found a gift card I hadn't used.   They are having a huge sale so I was able to score two pair of pajamas for $23!!!!!!    It was a huge success.  I was extremely happy and their pajamas as bar far the most comfortable ever!!!!

After we went to VS we went to Target.   We did the majority of our grocery shopping there and used gift cards.   Thank you to everyone who sent or gave us Target gift cards.   We have been using them for groceries and it has been a huge help!!!   The only things I refuse to get at Target are meats and fruits and veggies.   After Target we ran to Giant Eagle for the produce and fruits.   We never know what to buy or how much because we never know when I'm going to be healthy enough and stay out of the hospital long enough for the food to be good and not expire or go bad.

After the grocery store we came home.   I mixed up a meatloaf and got it ready for dinner so all I would have to do is pop it in the Nuwave (which I love by the way!!!!)    I laid down and took a small nap.

Dinner is in the Nuwave and I'm feeling pretty good.  I hope you are too.  Hopefully tomorrrow is a good day. No big plans really.   Just seeing what the day has in store for us.   Have a good evening.  I will post more later.

Tuesday January 24

Saturday, Sunday and Monday were pretty uneventful. Saturday night into Sunday I was extremely exhausted.   Every joint in my body ached.  I did not sleep at all.  I felt like I could feel my heartbeat in every single joint in my body.  It was a different kind of pain than I had ever felt before.  My nurse Becca (wonderful nurse!!!) was on the phone with the doctor and was working with him on pain management.   The good news is....I finished watching all the seasons of Shameless.  I finished season 7.  I can't wait to see what happens next!!!   I started a new series - this is us.   So far I'm liking it.  I even cried the first episode.   Hopefully it will keep me occupied for a little bit.

Each day I was in the hospital they did lab work.  I was on neutropenic precautions which meant no one could enter my room without wearing a mask.  The precautions were lifted on Sunday because my counts and levels were on an upward trend.  Each day the counts were better and I was feeling a little better.  

Today is Tuesday.  The doctors made their rounds this morning and said if I was feeling up to it I could go home.  I jumped at the chance.  I just want to be comfortable and sleep in my own bed.  

We were discharged around 1 and home by 1:30.  I'm so glad to be home.   We go back to the hospital on Friday to clinic for labs.  As long as everything goes well we are getting company this weekend and I'm super excited!!!   Hopefully I will stay on the upward trend.  Keeping my fingers crossed.  I will update later.  I hope you have a good week!!

Friday January 20

I had my third round of chemo last Thursday.  I was feeling pretty good up until Monday.  All my labs were good and my counts were good.   Tuesday I was really wiped out and fatigued.  Wednesday I was in pain on top of feeling like I was hit by a bus.   My white blood cell count plummeted and I had no energy at all.  It really took a toll on me.  

Thursday I woke up around 3am.  I had a huge swollen lip and my face was swollen.   I was in excruciating pain and extremely nauseous.  I also had a horrible headache.  The doctors made their rounds and ordered a bunch of tests to rule out any infection.  I spent the entire day in bed with my eyes closed because it hurt too much to have them open.   A little before dinner they came to take me for a ct scan.  After the scan I went back to my room.  I ate some chicken noodle soup and layed down.   

I woke up today not feeling well.  The doctors made their rounds.  They didn't find anything on the Ct scan so that was good.   They did however find an infection in my picc line.   They decided to do more bloodwork to check for the infection before they move the picc.  I also had to get a blood transfusion today because my counts were so low.  Now I'm waiting for the results of the culture to see if they are going to rewire my picc line or leave it.   I was told they are keeping me until Monday at the earliest.   Hopefully things will turn around over the weekend.   I will update you when I get a chance.  

Wednesday January 11

Once again I'm slacking.  I know.  

I was in the hospital until Friday.  Nothing too eventful.  I layed around and colored.  I watched some Shameless on Netflix.  I just wanted to go home.  They discharged us Friday around 3.  We stopped at the grocery store on the way home because the fridge was empty.  

We got a frozen pizza to have for dinner.  I put it in the oven and put my stuff away from the hospital.  Colin put away the groceries.  We ate dinner.  I took my meds and went to bed.

Saturday I got up, showered and got dressed.  I wanted to get out of the house so we went for a cosco trip.  I was so bored that we went up and down every aisle. They have so much stuff I never knew.  We ate lunch there too.   For under $5 Colin got a footlong hot dog and a drink and I got a BBQ beef brisket sandwich and a drink.   Not too bad!!!   We left Cosco and went home.   I took a nap.   Colin woke me up for dinner.  We ate and started watching a movie.   I got tired and went to bed.

Sunday I woke up and my back was killing me.  It was definitely a lazy day.   We were going to go to Cabelas for something to do but I was in pain and it was eight degrees outside so Colin didn't think it was a good idea for me to leave the house and do the steps.   I showered and we watched a movie.   I colored a little bit and then I went in to the bedroom and took a nap.  I curled up in my heated blanket and got comfy.  Colin came in and got me up and moving for dinner.   We watched tv for a little bit and I went to bed.  Pretty uneventful.

Monday we had clinic bright and early.  We were up at 5 and at the hospital by 6.   They drew labs and did blood work.  They gave me an antibiotic via iv that I can't take at home.   They also gave me mag because it was low.   The docs made their rounds and said everything looks good.   My G Tube was irritating me and was pulling out.   I showed it to Dr. Cruz and he said let's get rid of it.   He pulled it out and I immediately felt some relief.   It's now a pea size hole in my abdomen that should heal on its own from the inside out.  I was told it's going to leak when I eat or drink.  I'm ok with that for a couple of days because it was leaking with the tube in anyway.  After clinic Dr. Cruz said we could go home and he would see us back on Wednesday for another round of antibiotics.  We left clinic and went home.  When we got home we ate lunch, I took a nap and hung out in bed for a little bit.  I got up and we ate dinner.  I had put a pot roast in the crock pot.   It was really good.   After dinner we watched tv and went to bed.   Nothing too exciting.

Tuesday was pretty uneventful as well.  We ran to Target in the morning to get prescriptions and rented some movies at the Redbox.  I got Bridget Jones Baby.  It was cute.   Colin even sat and watched it with me.   We had leftovers for lunch.  I took a nap after lunch.  I just layed around the rest of the day.  We had leftovers for dinner.  After dinner we got a call from my transplant coordinator.   She told us they were scheduling my next chemo for Wednesday.  They may admit me today.  I told Colin and we packed a bag to be prepared.   We waited to hear back.   She called and said they were just going to admit me on Wednesday and to report to clinic in the morning at 6 and they would get me admitted from there.  I went to bed and set my alarm.

We woke up at 5 and headed to the hospital.  We were there by 6.  They drew labs and did bloodwork.  I colored while we waited.   There was a huge cluster and bed assignments screwed up.   We didn't get into a room until close to 4:30.  By that time it was too late to start the chemo.  I was so frustrated.  I got settled in my room.  Once I got settled Colin left and went home.  

Thursday morning I woke up.   The docs made their rounds.  Everything looks good on my labs.  They put the orders in for the chemo first thing in the morning.   Lunchtime came around and they still hadn't started my chemo.  We checked with the nurse and she checked on it.   We were told that the orders were messed up and had to be fixed.   We waited some more.  3:00 came around and still nothing.   Dr. Redner the oncologist came around to see how it was going and was told they hadn't started yet.  He was not happy.  Finally around 6, pharmacy sent up the chemo drugs.   The nurses that have to administer it were called.  The pharmacy didn't send all the meds so we had to wait some more.   Someone dropped the ball but they were all blaming it on each other.  No one was accepting responsibility.  I was in a fowl mood by the time they were able to start it.  They got started around 7:30 pm.  Colin stayed with me.  The chemo lasted hours and wasn't finished until close to 3am.   It was a really long evening.  I was miserable and frustrated.  Colin left and went home to get some sleep in bed instead of in the lovely hospital recliner.

Friday morning the docs made their rounds.   Everything looked good on my labs again.  Dr. Cruz and Bill were happy with everything.  Friday was a lazy day.   I was exhausted because I was up all night so I took a couple of cat naps.  I colored a little and watched Shameless.  Nothing exciting.  

Today I'm feeling like crap.   As Bill said......I've been hit by the chemo bus.  I didn't do anything today.  I'm a achy, tired and sore all over.   I'm in bed now and hopefully will get some sleep and feel better tomorrow.   I will post more later.   Sweet dreams!!!

Wednesday January 4

Monday morning after Christmas we had breakfast at Park City Diner with some of my favorite people - Jeremy, Janelle, Mason, Brynn and Rob.  It was nice to see them and to catch up.   Mason is getting so big!!  

 

After breakfast we got in the car and headed to Pittsburgh.  The ride was pretty uneventful.  We stopped twice but made it back to the apartment under 4 hours.  Once we got home, Colin unloaded the car and we put stuff away.   We ordered out for dinner because the fridge was empty and neither of us felt like cooking.  After dinner I took my meds and retired to the bedroom for the night.

Tuesday morning we had an appointment on 7 West.   They drew labs and blood.  My magnesium was low so they gave it to me via iv.  The doctors made their rounds and said everything looks good.  They want to wait on the PET scan results before they schedule the next chemo session.  The PET scan was scheduled for Friday.  We went to the grocery store on the way home.  We were away and I was in the hospital so our refrigerator was empty.  We got home from the store and put away the groceries.  I put on my pajamas and then made some broccoli casserole.  Colin made chili.  After we were done cooking we watched Suicide Squad.  After the movie I went to bed.   

Wednesday, Thursday and Friday were uneventful.  We got company on Wednesday evening.   Our friends Matt and Pete came to the house for a quick visit and then they took Colin to dinner.   I was too exhausted to go with them so I stayed home while they went.  Other than that I spent those couple of days watching tv and coloring.   I managed to make some phone calls about my insurance and I even cleaned and organized the desk and all of our mail.  I did get a phone call from the scheduler, they didn't allot enough time on Friday for a full body PET scan so they rescheduled it for Tuesday.  

Saturday was New Year's Eve!!  We woke up and I was having a lot of pain.  I showered and changed into fresh pjs.   I sat in the living room for a while and watched tv.   I made pot pie in the crock pot for dinner.  I ate lunch (leftover tuna casserole) and watched tv.   After lunch I took a nap.  I woke up and had dinner.  After dinner we watched tv.  I ended up falling asleep on the couch around 7:30.  Colin woke me up, gave me my meds and I went to the bedroom and went to bed.   I'm a real partier!!!!   

New Year's Day-   Happy New Year!!!!!

2017 is going to be a good year!!!!

Woke up, ate my breakfast, took my meds, showered and got dressed.  Colin was in the kitchen getting lunch and dinner ready.  I went in the bedroom and set myself up to color.   I colored until lunchtime.  Colin made Cuban sandwiches in the Nuwave oven.   They were delicious!!  After lunch I took a nap.  I woke up close to dinner.   Colin set me up on the couch.  He made pork and sauerkraut in the crock pot with mashed potatoes.  Dinner was even better than lunch!! After dinner he cleaned up and we played Phase 10.   He kicked my butt as usual.  We played until about 8 and then I went in to bed.   

Monday morning I woke up and took my blood pressure.   It was really high 217/106 and my heart rate was 118.  I took my 6am meds.   About ten minutes after I took my meds I got really nauseous and threw up.  I checked my temperature and I didn't have a fever.  Colin called the small bowel coordinator on call and let her know what was going on.   She said to take another hydrolozine and call her back in a few hours.  I did and re-checked my pressure.  It was still on the high side.  We called back with an update.   I was feeling better, not great but better.   She said to keep an eye on things and call back if anything changes.  Colin had made lunch plans with Matt and Pete.  They were in the area so he invited them to come over.  He made hamburgers and coleslaw.   They came to the apartment and ate lunch.  I managed to drag myself out of bed and went into the kitchen to find something to eat.   I settled on chicken and rice soup and crackers.  I ate a little bit of it.  The nausea had pretty much gone away.  After I ate I sat on the couch and we watched James Bond.   Matt and Pete left around 4.  I watched tv for a couple hours.   I had dinner (ravioli) and took my meds.   I was exhausted so I got settled and went to bed.  

Tuesday we had clinic.   We got up at 5 and were at the hospital by 6. The nurse took my vitals and I had a low grade fever.  They drew my labs and we waited for the docs to make their rounds.   My mag was low so they gave me mag via iv.  Dr. Gonoza is on rotation so he saw me when they were making their rounds.  He told us that my cmv levels were elevated and he thinks that's why I had the fever.  My PET scan was at 3 at Hillman hospital so he said to go to that appointment and if I don't have a fever after it's ok to go home but if I have a fever I'm supposed to call and go straight to the er.  If I went home I was to go to clinic on Wednesday to get my labs drawn again and check my cmv levels.  I didn't have a fever after my scan so we headed home.   We stopped at UNO on the way home to get something to eat.  I couldn't eat all day so I was extremely hungry.  After dinner we went home and I put on my pjs and went to bed.  

Wednesday morning we went into clinic.  My blood pressure was high and I had a low grade fever again.   They drew my labs and we waited for the doctors to make their rounds.  Dr Gonoza came around and said that my cmv level is elevated and because I had a fever that they were going to admit me for observation.  Everything else on my labs look good.  They gave me antibiotics via iv and we hung out and waited for a room to come available.   We got a room around 3.  I got settled and colored for a while.   Colin went home. It was a long day.  I watched tv and colored until I fell asleep.  

I'm feeling better overall.  My back is still really painful.  I have pain in my abdomen still but I'm managing ok.  Things with the transplant itself are going really well.   Everything is functioning the way it should.  We are just waiting on the results of the PET scan so we know what the next step is as far as the cancer is concerned.   Hopefully we will get answers this week yet.   All good things are coming in 2017!!!! Happy New Year everyone!!