It's hot in July

It has been so hot in SLC this month!  Craig has not enjoyed the weather much but has had some good things happen the past few months.  First, Maddie and Mitch have been living with us since the last post.  That's been fun and messy all at the same time.  The garage is packed full with everything that came off their truck.  They drove through a blizzard in Wyoming!

Chase came home that same weekend for his good friend Stuart and Sarah's wedding:

 Chase, Scout and I went on a hike on the "Z" trail above Olympus cove.

Celebrated Craig's 62nd birthday up Millcreek with good friends and family. 

Craig and his constant companion - the bag of dextrose he wears pumping sugar into him all day and night..

But look!  Here he is without his trusty companion!  This month we started experimenting and taking him off the pump for a few hours to see how he does.  Mitch figured out how much sugar he was getting through the pump per hour (about 1/4 cup) and we decided to see how he would do by just drinking that much juice (at the least) every hour.  He did fine!  We kept extending the time and now he goes off the pump first thing in the morning and we put a new bag on every night before we go to bed.  He really has done well and as long as he eats or drinks often, he stays in a good range of blood sugar.  He's never dropped below 80!  The night is a different story because he'll supposedly be sleeping and not eating but Craig never sleeps for long so he could possibly try going through the night if he eats every few hours.  It gives me peace of mind to know he is on the pump so I don't have to worry. Craig has been pretty nauseous at times and we've been changing up some of his meds with help from the nurse practitioner at Huntsman and we've finally got a nice "cocktail" of drugs that make his day a little better.  Ritalin (yes the same drug they use for ADHD) helps give him a little boost of energy and Reglan helps with the nausea if you take it before you eat.  It helps move the food through his system.  We tried a Fentanyl pain patch but it was too much for him so he's still sticking with the oxycodone. We haven't really seen a doctor all summer (except for the NP) and it's been nice.  Currently he is not undergoing any cancer treatment but we do now feel the radiation in March has helped shut down the extra insulin production from the tumors so that's why he's able to go off the pump for the daytime. We're taking all the good days we can.

He's even been able to get in the pool with his picc line arm on a floaty with the shower sleeve on.  We can't allow the line to get infected.  We push heparin in the line when he's not using it to keep it open.  Scott is great at getting Craig out in the pool at least once a week.

Today Maddie and Mitch are moving up to University Village which will be a great location for them.  Mitch has started his 3rd year of medical school in June and just finished his pediatrics rotation at Primary Children's and is now starting his psychiatric rotation at UNI and the VA.  Maddie will start her first year of med school on August 7.  We've loved having them around the house.  Maddie has been hard at work updating furniture for their apartment.  Here's a chair she reupholstered that she bought at Goodwill.  Way to go Maddie!

We've been doing a lot of hiking with Scout and friends.  This is my niece Andrea's dog Koa who loves the water as much as Scout does!

Andrea and Maddie

Maddie, Scout, Shelby and her dog Luna.  Luna and Scout have a "thing" going.

Nothing has changed

We met with Dr. Cizman, the intervention radiologist, who performed the Y90 radioembolization in March.  He said the MRI showed that the liver is about the same as far as tumor load.  Nothing has changed.  The sad thing is they didn't do contrast because of Craig's kidney disease. There is a contrast they could have used that isn't hard on the kidneys but can cause other problems (leathery skin!). The tech didn't want to use it without the consent of the doctor and he was at the VA hospital. So they didn't use contrast which is kind of a waste of a MRI!  The tumors don't "enhance" so it's hard to tell which tumors are doing what.  Another communication error on the part of the doctors.  These happen much too frequently.  Dr. Cizman did not recommend doing another Y90 treatment yet. The next one would target an area of the liver which could cause liver failure and we don't want to risk that when we don't even know that it worked.  I shouldn't be negative because it did work enough to get him home albeit on a glucose drip.  We has had some quality of life but it's pretty limited.  The real test will be this weekend when our kids will all be here!  Maddie and Mitch are on their way driving a truck with all their possessions across the USA and Chase is coming in for Stuart and Sarah's wedding on Friday.  I think this will raise all our spirits to have everyone here!

Less nausea and MRI

This week we met with a nurse practitioner at Huntsman who helps the doctor with symptom management, especially pain.  We talked about the nausea which has really been the most debilitating thing for Craig in the last week.  She told as about a drug that is great for pain and nausea and increases your appetite and we realized he's already taking it!  But not enough of it...so she doubled the dose and it has really helped with the nausea.  It's Zyprexa which is listed as an anti-psychotic but it's really a perfect cancer drug.  He took an extra one when we got home and it made him feel less nauseous all night!  So far so good.  It hasn't really helped with the appetite but she prescribed another drug, Reglan, to help with that.  He hasn't started that one yet as we've learned to just try one drug at a time to see how it affects you.  When you start two at once you don't know which one is causing new side effects.

Today he's having an MRI of his liver.  They finally figured out how to take him off the glucose pump since it can't go in the MRI room.  They're going to have a nurse with a shot of D50 glucose standing by to give it to him if he needs it during the 45 minute MRI.  We'll hear about the MRI on Monday with Dr. Cizman, the intervention radiologist.  Craig said to me this morning, "this is the last procedure I'm doing".

Pain in the gut

Craig is experiencing a lot of pain right in his gut.  We're not sure if it's cancer pain or something else because it's more on his left upper abdomen and that's not where the liver is.  It could be the spleen?  He will have an MRI next week and we will see what it shows.  We had doctor appointments this week but Craig wanted to push them a week later and have this week with no appointments.  The day we have an appointment just wipes him out.  He feels like it takes a day to recover from going out.  So we will stay away from Huntsman this week!

On Sunday night Craig was coughing and could hear a rib crack!  That's adding to his pain now.  We've wrapped him up in a wide ace bandage to help support the rib.  He's done this before so we know there isn't much to do about it.  Although I think he's ready for a little heavier pain medication.  Oxycodone isn't hitting it for him very well anymore.  He says he feels best when he stays still and then he falls asleep.  That's kind of the routine...sleep and then get up and try to eat something.  He does not have much of an appetite.  Ice cream is about the only constant food that he enjoys.  Anything with cherry flavor!

His blood sugars are still holding steady and high.  He's been an average of 222 for the last 7 days and that's with a drop in the rate of delivery from the pump.  The endocrinologist will possibly turn the pump down again this week.  Lisa, Craig's sister with diabetes, says that higher blood sugars make her feel nauseous so that may be the reason he's been feeling that way.

Cute girls

Our neighbors, the Browns, have 3 little girls.  Scout and I were outside on Easter and I saw their middle girl, Eva, playing on the lawn.  She came over and said "hi" to Scout and I.  She likes to throw the ball for Scout with the "thrower thing".  Next she said, "how is Craig doing in the hospital?"  I was surprised she knew he had been in the hospital and I said, "he's home now, do you want to come say hi to him?".  She said ok and followed me into the kitchen where Craig was sitting watching TV.  She walked up to the side of him and patted him on the shoulder and said, "how are you feeling Craig?".  I about cried it was so cute.  They had a little conversation and then Eva left.  Craig and I were both blown away by the thoughtfulness and sweetness this little 5 year old displayed.  When I told her mom about this cute interaction, she said the girls pray for Craig every night!  She said that family members have been asking her "who's Craig?"  Thanks sweet neighbors.  We are surrounded by so many people that are thoughtful and kind and always offer to help with anything.  We really feel so lucky to live in this neighborhood for 20 years on May 1!

Blood sugar going up

This past weekend things have changed a little for the better we think.  Craig's blood sugars have been as high as 345!  He hasn't dropped below 200 all weekend.  He has been very tired all weekend and slept a lot so it could be also due to higher blood sugars.  The effects you feel for high blood sugar are a lot like the effects for low blood sugar.  He is having a harder time telling if he's low or high these days.  His abdomen still feels very distended and tender.

Today we emailed with Dr. Weis's nurse and she sent an order through to lower the delivery rate on the pump to 60 mLs per hour vs. 70 mLs per hour.  We'll see what that does.  We did try stopping the pump on Sunday for about an hour and Craig's blood sugar only dropped about 60 points.  That did cause the line to be a little sluggish because the dextrose is very sugary.  We have to be very careful in not reducing the dextrose too much as he drops fast when it is going down.  The pharmacy is sending out a new pump with the correct rate of delivery.  We can't change the rate on the pump ourselves and I guess they thought that would be easier than having a nurse come out.  When we change the bag tonight we'll hook up the new pump and see how it goes.  Wish us luck!

The other thing that happened last Friday is we showed up for the MRI and they didn't know what to do with his pump.  It can't go in the MRI because it has metal on it.  We talked about extending the line about 30 feet to leave the pump outside the door.  Craig couldn't be off it for the 45 minute MRI.  So he didn't get an MRI.  I'm really surprised they were so baffled by the pump.  I would think lots of MRIs are done on people with some sort of pump hooked up.  We'll see what the intervention radiologist wants to do.  They want to see the status of the tumors since it's been about 4 weeks since the last Y90 treatment to his liver.  We just want the tumors to stop producing so much insulin so he doesn't have to carry around a back pack of dextrose!  Maybe we're seeing some help with that after this weekend.

Catching up with the Joneses!

This past week Craig has been feeling a little better, less abdominal pain which is nice.  His energy level is still pretty low but he'll get stronger with time.  His blood sugars have stayed pretty steady, not really going up too much but did drop a little a few times this week.  The glucose drip is still going strong and Craig has been unpicking the side seams on his shirts to accommodate his PICC line.

We appreciate everyone who stops by to say hi and sends texts or emails.  Our good friend Jason and his son Jake have been mowing the lawn which is so very nice of them!  We are very lucky to have so many family members and friends who love us and show concern for us every day.  We love you all!

Speaking of family...Craig's Jones cousins came to say "hi" on Friday night.  Richard and Shelli, Stanton and Nancy, and Marshall and Cindy from California.  It was so much fun to be together and catch up.  Thanks for taking the time to stop by.  We love you guys!  And thanks for the pie!