Hypoglycemia is an insatiable monster

Craig has been struggling to keep up his blood sugars for the last 5 months. We have met with many doctors and tried different medicines to try to help him. Everyone just keeps saying, "Eat more complex carbs!" So the poor guy has just been eating as often as possible but it's become hard to eat which seems impossible to say but it has become a chore.  Pop Tarts have been one of the things he's eaten a little of throughout the day and for some reason, they stay with him better than other things.  He's been eating pasta and bread and hamburgers and Lucky Charms.  They are a favorite!

We went to St. George last week to the home show and Craig made his way to the homes and snacked  on Pop Tarts and candy in between.  He did ok but always felt low or high.  Finally by Saturday, he was frustrated and done.  He couldn't eat enough to keep up his blood sugars and stuffing one more thing in his mouth was impossible.  We decided to get back to SLC and find help.  Luckily our friends Doug and Heidi Brewer were with us in St George and helped us clean the condo and kept track of us on the drive home.  We got home and talked to my doctor brother and decided to go to the ER.  We were just too worried about making it through the night.  You can go to sleep and never wake up.  The pressure was too much.

We went to the U of U hospital ER about 8 pm. When we checked in his blood sugar didn't register so it was under 60. Normal blood sugar is 80-120.  They gave him a slug of D50 dextrose and it would go up for about a half hour then drop again.  He ended up getting 4 slugs of dextrose in the 4 hours he was in the ER.  The doctor there said you'd have to eat about 50 candy bars a day to keep your blood sugars up. His tumors are secreting large amounts of insulin.  He's the opposite of a diabetic which is ironic since both of his sisters are diabetic.

They transferred him to Huntsman where he was admitted.  They put him in ICU because they would need to watch his blood sugars closely.  It was about 1 in the morning by the time he was in the room and we were able to settle down.  The put him on a constant drip of 20% dextrose. They pricked his finger every hour to make sure his blood sugar was around 100.  It would drop every once in awhile throughout the night and they would have to give him a slug of 50% dextrose again.  We were going to have to keep on top of this constantly.

On Monday, we called the kids to say they should find a flight to get here ASAP.  We didn't know if he would be able to sustain his blood sugar and if other complications would come up.  Chase got in about 6:30 that night from LA and Maddie and Mitch got here about 11:30 pm from Virginia. So nice to have them all here.

On Tuesday, the doctors came in and started talking about options.  The endocrinologist team wanted to increase the diazoxide to help with his blood sugar but we didn't feel like this would be enough.  The best way to stop the insulin production is to shut down the tumors.  There are a few ways to kill the tumors:  CAP-TEM a combination chemo pill that could take awhile to work, regular intravenous chemo, or Y90: radioactive beads they place in the liver.  After many up and down days last week, he decided that the Y90 is the best course of action.  He has struggled with the benefits of treatment and whether this will make enough difference in the insulin secretion.  He will be tethered to the glucose drip no matter what happens and this will require him to stay in the hospital while he undergoes treatment.

On Friday they took him to radiology for the "mapping" of his liver.  They placed a urinary catheter and it caused Craig a lot of pain because of his enlarged prostate.  The pain got so bad that he decided  to forego the procedure and wait til next week.  It was a tough day for him and we all felt unsure what was the best way to proceed.  There were too many issues today to make it feel like a good decision.

Over the weekend Craig, the kids and I spent a lot of time talking and weighing the options.  He continued to receive the life-saving glucose but even when he went off of it to take a shower for 10 minutes his blood sugar dropped below 60 and he crashed.  They then have to give him a slug of 50% dextrose to bring it back up.  So the idea of him going home is very unlikely for quire awhile.

He decided to go ahead and try the liver mapping again today and it went much more smoothly and we are now waiting to hear if everything looks good to proceed with the radiation. We should hear about that tomorrow.  The soonest we could do the procedure is next week.  They have to bring the radioactive beads in from Boston and they cost about $18,000 per treatment.

The vacation from chemo is over

Unfortunately, cancer has decided that Craig's vacation from treatment is over.  Six months was long enough. On Sept 13 Craig had a scan of his abdomen and chest. The next day we met with Dr Weis and he revealed the results of the scan. The tumors in his liver have grown by about 25%. Tumors that were 12 cm x 6 cm are now 15 cm x 8 cm. Dr Weis said that we had 3 choices: do another chemo embolization (liver-directed therapy); undergo intravenous chemo; or start on a new chemo pill, Everolimus. Craig was surprised that the tumors had grown that much. He said he was willing to try the pill. So a few days later the insurance was worked out and he picked up the medication. Interesting thing about the packaging. The pill is in a blister pack and on the outside of the bag it says to only handle with rubber gloves. Pretty crazy he's ingesting something that you can't touch with your bare hands. In true Craig fashion, he refused to take the full dose at first and broke the toxic pills in two. He took the half pill for 6 days and noticed a few side effects. Weird things like the pads of his fingers feeling very hot, extreme headaches that start with the feeling you are inhaling a toxic smell and it goes up in your sinuses and then your head "closes in on you". Those last for more than 10-15 minutes. When he started on the full pill a week ago he still continues with the same side effects including being more tired but now having thrush (yeast infection) in his mouth and throat. He has been gargling with baking soda and salt which seems to help.  His gut feels tight and he has cramping quite often. He says the side effects are better than the last pill Sutent.

One issue that forced Craig to go back to the doctor was his blood sugars. He's been having a tough time keeping his blood sugar up. He can't eat enough food to keep from crashing every 3-4 hours. We thought it might be the tumor on his pancreas coming to life or maybe an insulinoma which is a new tumor on the pancreas that overproduces insulin.  What Dr Weis surmises is that the new tumor growth is eating the sugars in his body. We hope the new pill will help with the low blood sugars plus stop the tumors from growing. It's not likely the pill will kill the tumors but it should hold the tumors from growing more.

In other news in the last 6 months: we had a wedding!  Amazing to think that Craig is still here for Maddie's wedding. I remember when we hoped he would see Maddie graduate from high school and now she has graduated from college in May and was married in July.  It was a beautiful day and we absolutely adore Mitchell Devon Peterson her new husband.  They are living in Richmond VA where Mitch is in his second year of med school at VCU.  Maddie is currently applying to med school for fall 2017 and working for a urologist in VA as a scribe. We are officially empty nesters and we aren't real happy about it but we do have Scout and we hope to travel on the motorhome and visit our kids regularly!  We just hope Craig will be up to it all.

Maddie and Mitch are Married!!

In other news in the last 6 months: we had a wedding!  Amazing to think that Craig is still here for Maddie's wedding. I remember when we hoped he would see Maddie graduate from high school and now she has graduated from college in May and was married in July.  It was a beautiful day and we absolutely adore Mitchell Devon Peterson her new husband.  They are living in Richmond VA where Mitch is in his second year of med school at VCU.  Maddie is currently applying to med school for fall 2017 and working for a urologist in VA as a scribe. We are officially empty nesters and we aren't real happy about it but we do have Scout and we hope to travel on the motorhome and visit our kids regularly!  We just hope Craig will be up to it all.

Pain at a 10!

Poor Craig!  On Tuesday (2 days ago) he was awakened in the late morning suddenly with horrible pain in his abdomen.  Unfortunately I was not home so he had to deal with it by himself for a little while until I received a desperate text to come home asap!  When I got home the poor guy was moaning and more miserable than I've seen him for a long time. It was unbearable pain. We went up to the Acute Care Center at Huntsman Hospital which is so much better than going to an ER. They know his history and could immediately get him into a room. His pain was at a 9-10 and the morphine they gave him did not touch the pain. His whole abdomen was very tender and the center of the pain was right at his belly button. Even jiggling his bed at all created pain. They gave him morphine and it still wasn't hitting the pain.  He had a CT scan that showed a kidney stone but it was not where it should cause pain. His kidney looked inflamed so there is something going on there. Dilaudid was then given for pain and after about 4 doses of that he started to feel some relief!  He was moved to a room in the hospital and started to settle down more. They wouldn't let him eat or drink all day because there was a possibility of doing surgery or a procedure under anesthesia. His mouth was extremely dry and he could only suck on little ice chips. They continued the Dilaudid through the night and he was able to rest.

On Wednesday, his pain disappeared and he was able to touch his stomach again without pain.  Amazingly the pain didn't come back all day. The doctors are not sure what caused the pain in the first place.  The scan didn't show a bowel obstruction/perforation or internal bleeding.  The doctors said that sometimes we don't know the answers. I didn't like that answer!  Later in the afternoon the 3 doctors came in (all oncologists!) with news about his kidneys.  He has Acute Tubular Necrosis which means the kidney is breaking down inside and granules of the tubes are showing up in the urine.  This usually occurs when there's been a trauma like a heart attack or stroke. We really can't figure out what happened but it must have something to do with the pain. Now we know that the kidneys are worse than we thought. They can sometimes repair themselves if you don't have any other health issues. Obviously, he does. The doctors took him off his cancer drug, Sutent, which they feel is contributing to his kidney issues.  They also took him off his blood pressure medicines to preserve kidney function. His creatinine level is now 3.2 where it should be under 2. He's been flirting with above 2 for the last year but now it's gone much higher.  The protein in his urine is also too high which means Kidney Wasting Disease.  His level is 3 grams.

Today is Thursday and he is doing well but wants to go home. They want to observe him another day. The issue now will be what to do about the cancer and still keep his kidney function going.

Maddie and Mitch are engaged!

Here they are at the Jefferson Memorial in Wash DC on Sat., Feb. 13, where Mitch went down on one knee in 8 degree weather (brrr!) and asked Maddie to marry him!  Mitch goes to VCU (Virginia Commonwealth) medical school in Richmond VA.  Maddie visited over President's Day weekend and this happened!  We are all thrilled!  love 

2015 Update

We're still alive but you wouldn't know it from the infrequent blog posts!  Craig has been doing fairly well for the last year and a half.  No major upsets or hospital stays.  He is really showing the cancer who's boss!  His doctor has even stepped aside (haha) and told Craig he might as well direct his own care as he's the one calling the shots.  Craig did have some tumor growth (about 25%) on the scan in July 2015 but chose not to change anything (he did increase the Sutent for about a week but it made him throw up too much) and the new scan from last week shows no new growth from the last scan!  So Craig seems to know what's going on in his body better than anyone else does.  I was pushing hard to try a new drug but he resisted (and won of course!). We feel pretty lucky to be 6.5 years into this and he's still kicking!  We definitely acknowledge that not a lot of people diagnosed with cancer are still around after this many years.

Craig has been feeling ok but tired and having quite a bit of discomfort in his gut. The diarrhea is relentless and if that's not bad enough, he throws up some food most days.  Hope you're not eating as you're reading this!  Eating is his hardest thing.  He often says that if he didn't have to eat his ife would be easier.  White bread and English muffins are his mainstays in food.  Sometimes potatoes but protein is the hardest thing for him to digest.  He would really love to eat a salad but it is just too hard to digest and when he does try it he usually pays for it for hours after.

One other issue he's dealing with is his kidney function.  The numbers that show kidney function are going up each time they check meaning the kidney is not doing its job as well as it should. The creatinine level should be under 2 but he is up to 2.5 now.  We're working with a nephrologist to try and help his kidney function.  A few of the drugs he takes are tough on kidneys so we have to decide what he can change.

That's the latest on Craig. He is pretty amazing enduring many years of cancer.

Below is Thanksgiving in California.That's Maddie's boyfriend Mitch on the left. He's going to med school in Richmond, Virginia at VCU. He's a great guy, we love him! As you can see, Craig was full of energy on this trip! He really does feel better on trips but he comes home exhausted!

We're very appreciative this Christmas for the life we have and the time we continue to have to spend together. Chase is here for the holidays from LA where he has lived the last year and a half.  He is
working as a copywriter for an ad agency, David and Goliath. He lives in Venice Beach and loves the good weather and single life. Maddie has one more semester at the U of U and will graduate in May 2016 in biology/chemistry. She will take the MCAT in April and apply for medical school next year. This is the gingerbread house she created this year for The Primary Children's Hospital Festival of Trees. It sold for $435!! All proceeds go to the hospital.

More Thanksgiving photos...Craig enjoying Universal Studios...

Eating at Cheesecake Factory in Santa Monica.

Craig retiling the pool in September. Very ingenius system in a little inflatable boat!

August 2015 - Annual Yellowstone trip with his siblings 

(Maddie and I tagged along this year as well as Marie, Taylor and Ellie)

 Taylor, Maddie and Ellie

 Maddie, Ellie and Lisa

Marie, Craig, Lisa, Suzy and David

Maddie with Mitch at his white coat ceremony in August.

Suzy and Scout volunteer at Primary Children's Hospital.  Scout is a therapy dog and loves visiting the kids and playing with them in the therapy gym.

Greta Ann

This crazy, full of life, energetic, tough-as-nails, beautiful woman passed away yesterday, March 1, 2014.  Craig's younger sister, Greta Ann, 53 years young.  Lived life to the fullest until the effects of lifelong diabetes caught up with her.  She leaves behind an amazing 20 year old daughter, Caylie, who has already lost her dad to cancer 12 years ago.  We will all now adopt another daughter whom we love dearly.  The Doutré silblings are absolute heroes in the loving way they have cared for Greta Ann these last 6 months.  We'll miss you girl...have a wonderful reunion with Paul and your dad.