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!

Wednesday at the hospital

On Wednesday, the intervention radiologist, Dr. Cizman, came in to tell Craig that he would need to decide if he's going to do the 2nd radioembolization in the next day and a half.  We didn't think we'd have to decide about that until next week and this was quite a surprise to both of us. Craig couldn't stay at Huntsman until the next procedure (because of insurance) so he would either need to come home or go to a skilled nursing facility.  If his blood sugars are stable for a few days with just the glucose drip and no extra shots of glucose then he'll be released from the hospital with the glucose drip.

That day, my sisters and brother and his wife and a few kids all came to see Craig and have lunch at Huntsman. Wednesday is my favorite salad: strawberry, spinach, and salmon salad!  Craig was pretty sleepy today so he slept through a lot of the visit.  He has not experienced any bad side effects from the octreotide so far so we're happy for that. Today his blood sugars have been fairly steady, hanging around 120-150 which is good for him

At the end of the night, Chase and I talked with Craig about his decision to continue with the 2nd treatment. He was feeling pretty lousy most of today and slept quite a bit.  He wasn't sure he wants to do the second treatment.  Tonight he was also thinking it might be time to "call it".  He had never intended to do more treatment and this blood sugar issue has pushed into treatment he never thought he'd do.  It's weird how life takes turns you don't expect and the decisions you make at that time are unexpected as well.  We've always thought we'll make the best decision we can at the time with the information available.  Craig always tries to base his decisions on logic and not emotion but when you get to this point, it's not always easy to leave emotion out of the decision-making equation.

We have a plan

Today started out with a phone conversation between Craig and I talking about what he wants to do.  He wasn't sure and knew he was being pressured to make a decision.  During our conversation, Dr. Weis walked in his room just when we needed him.  He basically presented to Craig that he has two options: go home with a glucose drip and think about what he wants to do; or start the octreotide shots and plan to do a 2nd radioembolization in a few weeks.  He said Huntsman is not a hotel (although it would be a nice one!).  Dr. Weis knows Craig and has learned how he does not make rash decisions and has to think and talk everything through logically.  Craig right then and there said he will do the octreotide shots.  So the first shot was scheduled for 2 pm today.

Craig's cute little sister Lisa came by and I took that opportunity to sneak off after the octreotide shot to see "Beauty and the Beast" with my very nice friend Sherrie.  It was a lovely break and I escaped into the beautiful world of Belle!  Craig didn't feel much different after the shot and napped and was ready for a 5 Guys burger when I came back up.  Chase was there with him and things seemed much more relaxed than yesterday.  We have a plan and that brings everyone's stress level down.  Chase has had many opportunities to have great talks with Craig on these long days in the hospital.  Luckily Maddie can also have talks with Craig by FaceTime and phone now that she'd back in Virginia.  These are precious times for all of us to spend time together.

Monday

Craig had a pretty good night last night.  Sleeping by virtue of another drug added to the regimen. When I spoke with him this morning, he had just had the doctors come in and ask him if he was going to do the octreotide shot or continue treatment. Craig said he didn't think so and they talked to him about the fact that he can't stay here unless he's undergoing treatment.  They talked about sending him home with the glucose bag on a pole and having a home health nurse stop by to check on him a few times a week.  He does not want to come home and put the burden on me to be the nurse.  It would be 24 hours a day, every 2 hour blood sugar checks and worries about eating and keeping levels ok.  We would be back to the same problem we had before; worrying about blood sugars, the picc line and possible infections and forced eating.  The meeting with the doctors and PAs and NPs was abrupt and unexpected.  We did not anticipate this happening today.  Huntsman really still doesn't have the blood sugars under control enough that we would feel comfortable being away from the hospital.  Today his blood sugars have dropped to 70s twice and he required a D50 shot each time.

Chase and I spent the day talking to Craig about options and what is the best thing for him right now. We talked about hospice and what that would entail.  He could go to an inpatient hospice and stay on the glucose drip until he was ready to turn it off.  We talked about continuing to the 2nd radioembolization in a few weeks.  This week Craig is worried about Mitch and Maddie and not wanting to create stress for them as Mitch takes his test.  We also talked about the octreotide shot which may be a good option right now.  It would be fairly easy to try and we would see pretty immediate results.  It affects the hormones secreted from the tumors and could possibly make a difference in the blood sugar levels.  It also could turn him into a diabetic, the opposite of his problem now.  All these things have consequences and effects which may be hard to take or unpleasant for his quality of life.  He is between a rock and a hard space and it's pretty scary for him to decide which option is best.  Hopefully, as he sleeps on it the answer will become clearer.  The stress is definitely higher when we don't have a plan.

Sunday

I slept over with Craig on Saturday night.  It was a tough night. He was awake or someone was in here every half hour. His blood sugar was in the 80s so he could drop fast and they wouldn't come back to check him for 2 hours. I would fall asleep and worry they hadn't checked him for awhile. I would call the nurse and they'd come in and wake him up and check him.  It went on like that until about 5:30 am and I decided I couldn't sleep anymore because I was just too nervous watching him.  He was asleep pretty soundly now and I went home to sleep in my bed.  Craig called me about 10 am and the first words he said is "I'm done".  He said, "Do you want to have me home and have nights like that?"  It's hard to say yes because no one wants to live like that.  He was sad and upset and felt like everything we've done to try to preserve his life has only made him feel worse.  He said he feels like he's back to the same problem we came in with added problems.  Nothing has really changed.  He's still unable to keep up his blood sugars on his own and if he doesn't have the glucose drip constantly going in him he will die.

Chase and I came up about 11 and Craig requested a Frosty from Wendy's so we brought that up and he enjoyed a few spoonfuls.  He was feeling very down and didn't want anyone visiting. We had a very tearful phone conversation with Maddie.  It is hard to have her across the country again.  The nice thing is we have the luxury of conversations like this where we can say the things we want to say.  So many families don't get this time.

Dr Whisenant came in and we discussed our options.  The doctor says he's surprised we haven't had an obvious effect from the Y90. It's been 4-5 days and we should have seen something by now.  He suggested trying octreotide (an injection that lasts 8 hours).  Craig had taken this drug at the very first of his cancer battle and it caused bad side effects like flushing, diarrhea and high blood sugars. We don't know how it would react in his body now but Craig wasn't sure he wanted to try it.  Everything they suggest is just a bandaid.  Craig likes the metaphor: "It's like throwing an ice cube at a raging fire".  We told the doctor we'd think about it.  We also asked him what would happen if Craig chose to not take any more dextrose.  He said he would within hours experience the effects of low blood sugar and go to sleep as his brain is deprived of sugar.  They would keep him out of pain with morphine and he would gently slip away.  It would most likely take no more than a few hours or perhaps a day or so.  Craig likes to feel he has some control by knowing he has this option.  He would be able to stay here at Huntsman and it would be a peaceful event.

The blood sugars are still being held up by the dextrose drip and the extra D50.  Craig hasn't felt like eating at all today. His pain was higher and the nurse gave him more oxy than he usually has and that made him pretty sleepy for a few hours.  He feels like his nights are turning into his days.  Just trying to endure to get through the hours.  When he awoke we went for a walk outside and sat and looked at the mountains.  The evening was mellow and we kept it quiet.  I am so thankful to have Chase here right now to keep me sane.

Saturday

Chase slept over on Friday night and they had a pretty good night. Chase said he was pretty restful throughout the night and only awoke when he had to use the bathroom. Craig ate half an omelet in the morning and that was a good thing. His mood is definitely better when he eats something with fats and proteins.  Living off the glucose is possible but not recommended.  He was in a pretty good mood and I came up in the early afternoon and his brother Dave and sister-in-law Marie were here visiting with him.  We went outside and it was a lovely day.  He didn't feel like eating anything for lunch and was in pain in his gut. We came back to the room and he got more drugs and he fell asleep on the couch. Jason and Sherrie visited and he slept through that visit and Heidi and Doug came and he slept through most of their visit too. It's a nice break to have friends stop by but Craig feels bad about sleeping and not "being there" to see them.  He doesn't like that he'd rather sleep than talk to friends and family.  His pain seemed more today. His gut just feels so distended and tight,