Nausea

This past week Craig has been feeling more nausea and his abdomen feels very distended and tight.  We know there is inflammation with the radiation so that probably accounts for the tightness. Nausea is another side effect of the radiation.  He's been laying pretty low all week and sleeping quite a bit.  He did go to Dr Weis on Wed. for a check-in.  They drew blood on him from the extra line on his pic line and the numbers were way off.  Blood sugars were 1600!  I think the nurse who was drawing blood didn't clamp the dextrose line so all the labs were messed up.  The next day the home nurse drew the blood properly and the numbers were more normal.  His liver is holding pretty well with all this invasion with radiation.  We will wait a month and scan him to see what everything looks like before we do the 3rd treatment.  We need to make sure the liver is still functioning properly.

Our good friend, Dave O'Leary, invited us to the screening of "Le Ride" produced and starred in by Phil Keoghan (host of The Amazing Race).  It was a fundraiser for Huntsman Cancer Hospital.  Phil and a friend actually recreated the 1928 Tour de France riding a single speed bike over 3000 miles around the perimeter of France.  They made this documentary and are showing it in 12 cities across the country as fundraisers for local charities.  If you get a chance to see it, please do.  It was "amazing"!  Dave and his son Connor actually won the Amazing Race a few years ago.  Here's Craig holding his glucose "purse" pump.  I was happy he felt well enough to go out for a few hours.

Doing well at home!

Craig is doing very well at home.  We've got the dextrose bag changing procedure down.  We have to change the bag of sugar water every 24 hours and clean out his lines with saline and reset the pump to do it's job.  The nurse came over the weekend so we could change his pic line again (once a week) and she said I was doing ok on the bag changing procedure so she'll just need to come back next Sunday.  Craig did have a mishap with his bag in the middle of the night Fri. night.  He was getting something to eat and set the bag down on the counter and turned away from it and it fell to the ground and started making all sorts of beeps and noises.  He woke me up and we tried to reset it but we couldn't get it to work again and nothing was pumping into him.  We called the 24 hour homecare helpline and I told her he couldn't be without this or "he will die"!  I was a little panicked at the time! She had the pharmacist call us back and we tried a few things to fix it but it wouldn't stop beeping and telling us it had a problem with the cassette that fits on the bottom of the pump. Finally we decided to put a whole new bag on with a new cassette and it worked again!  That was a test of my skills, since it was 5 in the morning and I wasn't fully awake!  Since then he's been doing well and his blood sugar has stayed up all weekend!  It's definitely trending up which is a good sign the radiation is working to shut down the insulin producing tumors a little.  Hopefully we will slowly be able to reduce the glucose going into him but not quite yet.  We see Dr. Weis this week so we'll get an update on labs, etc.  Life is going pretty well and we hope it will get better for Craig soon.

Here's Craig modeling his latest outfit.  It's tough to have sleeves and an IV in your arm.  He squeezes the bag through the arm hole and it works!  He's definitely a fashion statement!

Maddie and Mitch in Paris!  We love living vicariously through them.

2nd radioembolization done!

Craig just got back after a 4 hour procedure placing more radioactive beads in the left side of his liver. This is the 2nd of 3 planned procedures. He always comes back in pain because he has to lay straight on his back for 4 hours after the procedure. They gave him dilaudid and it makes everything feel much better!  He's snoozing now. It's a little lonelier here this time without my awesome kids. His blood sugar did drop twice today below 60 so he's had 2 infusions of extra D50 to keep it up. He hasn't had any food either but they did increase his regular glucose drip to 100 mls per hour from 70. His body doesn't know what it's doing.  Today he'll just be sleeping and staying out of pain.  I think he'll be here at least a few days.

Back in the hospital

Craig's back in the hospital for another procedure tomorrow morning. They had him check in tonight to be ready for the next Y90 treatment at 8 in the morning. He wasn't too excited to come up here but now that he's here he said it feels way too comfortable. All the nurses and aides were happy to see him and greeted him as we walked in. The white board in his room had a greeting from one of the aides "Taylor ❤s You!"  It was pretty cute.

The weekend

Well, it's Sunday night and we've made it a full 2 days at home!  The first night was a little rocky.  The patient (Craig) was not as compliant as he'd been at the hospital!  He wanted to do things his way and of course I thought we should do it the way I had set up!  When it was midnight and I wanted to go to sleep, he was ready to stay up for awhile (he'd had a few naps!)  I felt responsible for his well-being and wanted him to just go to sleep!  We were up and down all night and it was stressful.  Chase did his best to keep everyone sane!

There is lots of stuff to figure out quickly.  6 shots a day of octreotide.  I'm ok at giving the shots but I'm not the greatest at filling the syringes.  I'm getting better but keeping pressure in the syringe while adding medicine from a 2nd vial is tricky.  We had a nurse come each day at 2 pm to help change the bag of dextrose in his pack.  This requires flushing his lines to keep them clean and adding heparin to the extra line to keep clots from forming.  Lots of alcohol wipes and caps and connecting lines and keeping them sterile all the way.  Respect your nurses!  They go through A LOT of training and know a lot of things!  Our home nurse was very patient and helpful in showing us what to do and the reasons for doing everything.

On Saturday morning when we checked his blood sugar it was 78.  That was scary because in the hospital they would be giving him an extra shot of D50 if it dropped below 100.  So we had to quickly have him drink juice and eat waffles with syrup to bring it up.  His steady blood sugars of the last few days were not going to be consistent.  Who knows if anything is really helping to lower the insulin production?

The highlight of Saturday was hearing from Maddie and Mitch in London!  They arrived Saturday morning and sent pictures of their travels the first few days.  Here they are in front of Buckingham Palace.  We miss them so much but are so excited for their adventures in Europe!

Chase went back to LA tonight and we will definitely miss him around the house.  He has been a huge help and fun to have around for comedy and emotional support (for his mom)!  Chase was very devoted to us and spent most of his time at the hospital with us.  Last night all his friends came over to watch the NCAA games with Craig and it was so much fun to have all "our boys" here.  They  watched Wallace and Gromit shows too for a blast from the past.  Craig loved having them here.  Thanks Chase for taking good care of both of us.  You will be missed!

By Sunday night we've had many visitors and lots of lovely food brought over.  Thank you to everyone we know who are taking such good care of us.  We are feeling very loved and supported.

He's home (for a few days)!

On Friday we waited all day at the hospital for Craig to be released. He will be going back up next Wed. for the next radioembolization on Thurs, 3/30.  They had to arrange for the dextrose 25 to be packaged and a week's supply brought to our room. This took until about 5 o'clock when we received 4 boxes of the fluid on ice that we'll need to keep refrigerated. Each bag will last 24 hours.  We also rcceived the portable pump to take home with us.  It's in a handy backpack that he'll have to carry with him everywhere. The infusion expert changed him from the hospital pole to the portable pump so he could leave. He can't be off the infusion of glucose for more than a few minutes. We waited another hour for the octretide from the pharmacy!  The nurse kept coming in to see if we were still there. We left for home about 6:30. Chase was the work horse and got all the boxes and supplies to the car. Drove home and arrived around 7. Nice people had left us sandwich makings and even homemade chicken noodle soup and yummy rolls and salad.  Thanks everyone!  We are so blessed and thankful for everyone's efforts on our behalf.  We are so lucky to have such great family and friends. Love you all 💚💙

Thursday?

These days really run together, they seem to go quickly then very slowly.  We've been totally confused at times what day it is.  Chase can't believe he's in his 4th week of missing work.  Luckily they have been very understanding of the situation.  Today is Mitch's Step One test for med school.  This test is the culmination of the first 2 years of class work and plays a very big part of determining what specialties will be available to him in residency.  We know he will do VERY WELL and we are so proud of his hard work.  He will be so relieved to have this over and enjoy 3 weeks in Europe with Maddie.  We miss them both but are so excited for their trip!

Today we went up early to talk with the doctors about the next treatment and if he'd have to leave the hospital.  We lucked out and had both the intervention radiology team and the oncology team in at the same time.  That's the thing about hospitals.  You never know when the doctor will come in and you spend a lot of time waiting for them to show up.  So they talked about what they'd like to do and that March 30 would be the day of the next treatment.  Craig was surprised and wanted to wait another week but after much discussion he came to the realization that next week was best.  The radiologist explained that with Y90 they like to keep going in in regular intervals to kill tumors as quickly as possible.  They get the best results that way.  The oncology team felt that the positive response he is feeling the past few days is attributed to Y90 and the octreotide.  Craig feels the octreotide is the reason because he's noticed his improved appetite and less distended abdomen just the past few days. Most likely it is both treatments.  This is such an improved procedure over 8 years ago.  The chemo embolization was brutal.  Look back to 2009 and the photos of Craig in October and you'll see how lethal that treatment was.  This Y90 is a game changer and could give Craig a few more years.  Really quite amazing!

He needs to leave the hospital now because insurance won't pay if he's not actively having treatment or is in a crisis situation on his blood sugars.  Since the sugars have been stable on the drip for the last 48 hours, he will come home on Friday with the glucose drip.  He will need 6 shots a day of octreotide, plus pain meds, and glucose tests every 2-4 hours.  I will be a full time nurse!  Luckily I have Chase's help for the weekend but he'll go back to LA on Sunday.  A home health nurse will come probably daily to check him and change the bag of glucose.  I'll have to change it too since it runs about 12 hours.  Chase helped me set up Maddie's room as his "hospital" bed so he can sleep whenever he wants and have privacy.  We also moved his favorite chair from our room to the kitchen and made a straight shot to the chair so he can wheel his pole in there with him.  I think this will work well for the next 5 days until we check him back into the hospital next Wed. for the 2nd embolization on Thursday.  Wish us luck!