a little rant does me good

Yesterday, we met our new medical oncologist. He wanted to know if we do any stupid, high risk things like talking on the cell phone while driving, or not wearing our seatbelts. He stressed that if you are given a great prognosis in the face of what is generally considered uncurable, you should take extra precautions so as to not lose your life some other, trivial way. If they are going to work so hard to save us the least we could do is live well.

For the dry run, our interventional radiologist tried to advance a wire thru his biliary drain to the area where they think the cancer is. The dr didn't anticipate that the wire would not be flexible and would go thru the drainage holes and poke his liver. A new catheter will have to be placed. It is actually two catheters, one for drainage and one solid tube for the wire. It is only available thru the Mayo clinic in Minnesota because no one else does this procedure. Since Scott is the first to have this procedure at the U, they are still learning and working out the bugs. I guess someone has to be the first(being first is only really good if you are in the lunch line in gradeschool). I guess at least this is a problem they can fix and it is not life threatening. It's just a bummer that this will be Scott's 4th biliary drain.

Both our radiology oncologist and our interventional radiologist were thrilled to see that, where the radiation treatments were directed, the biliary tree looks completely normal. There are no signs of cancer or PSC. We were sent to the University hospital because no one but the most experienced gastroenterologists have been able to navigate thru the tight maze of strictures. Only one dr has even seen beyond the opening of the left branch of his biliary tree and now it is open and beautiful. They are so excited because this is a great side effect of the radiation that was completely unexpected.

This is such great news for Scott and it really could have an impact on how psc is treated. It would be a huge deal if drs were able to erase serious strictures in patients that otherwise have little quality of life. They might be able to prevent the torturous cirrhosis and liver failure typical of this disease.

On the online support group for psc there are so many children and young people with this disease. You can feel the anguish everyone has that there is no real treatment for psc. They can only treat the symptoms as the disease tediously progresses to complete liver failure. I hope, I hope they pursue this.

If I ever make a million(it might take several) I am going to devote it to research for the actual treatment of psc. I want a treatment that doesn't involve your liver literally dying before you can receive a liver transplant. I want a treatment that saves your own liver. I want a cure.

I also want a specific cancer marker for cholangiocarcinoma found. High risk patients(everyone with psc) should be effectively screened and diagnosed earlier. It shouldn't be an absolute miracle to survive cholangiocarcinoma. It stinks that 90% of people diagnosed with CAA are completely untreatable because they cannot find it soon enough.

Enough rant.

More good news:

Scott recieved an email from a bow tie manufacturer who has taken a second look at his patterns submitted years ago. They are excited about his patterns and want to use them. They are even more excited about the patterns he has on his web site. Scott is the king of patterns. He literally has hundreds of patterns. He loves, loves making patterns. I'm excited because it will give him a constructive diversion for the months to come.

Scott also recieved a great review from Jordan School disctrict. They can't live without Un-Brella. Love it!

There was something else but I can't remember. Oh, well.

Scott feels like a truck has hit him and threw up this morning but I just feel happy to be home. I am happy that my kids have been so good for the grandparents. I'm happy that the kids got off to school this morning with their teeth brushed(never mind the hair). I'm so happy and amazed that we are actually making our way thru this jungle. I just feel blessed.

a pretty good day

Scott worked all morning on a book he has been developing. He finished a rough dummy and sent it to his editor. Even when he is completely healthy that is a big accomplishment.

I love the book. It is about mosquitoes that mix colors and then die.

Personally, I am trashed and working on a bare minimum level. I spent the morning in bed vegetating, commited to doing absolutely nothing all day. It was only the prospect of driving Scott to Zippy-Ship that got me showered and dressed. Perhaps, it was the prospect of getting me out of bed and showered that drove Scott to finish the book dummy. I guess we are good for each other.

Last night, Scott dreamed that our friend was making a hillbilly movie in the shop next door. His wife starred in it with some other actor. She and this other man got out of an old pickup truck. The man reached over, picked a cootie out of her hair, ate it and said, "Mmmmm...."

They were just coming one after another last night, every couple of minutes. After about the third one, I checked out, too tired to care anymore. They're all just as bizarre as bizarre can get.

Scott's home

Scott came home last night. He isn't feeling great but at least he is in his own bed. The radiation clinic said it should be but a few days before he feels better. We are so happy to be done with that section of treatment.

The kids had a good first day of school. N. teacher looks like Miss Honey on Matilda. No one has the Trunch so we're all happy.

C. and I are having a great time. She just informed me that this was enough and that it is her turn on the computer. I suppose it is enough and that it is her turn.

by the way.....

There were 65 spiders total in my spider trap.

Thank You, John and Kathy!!!

Scott's parents have traded me places for this last week of radiation for Scott. I am so grateful to be here for the kids' first week of school. It has been a real gift. Thank You so much.

It's been a good day. The kids have tried really hard to help out and have even made an effort to get along. There were only 2 time outs and 3 meltdowns if you include mine. It has been as normal of a day as we've had since May.

N. says she doesn't want to go to school but since we are having a scheduled practice in the morning with alarms set and everything, I think they are all excited and ready. We have dentist appointments at 8:30 so it should be a pretty good practice.

I talked with Scott earlier today and he sounded well. Just two more treatments this week. Yeah!!! Now we just have stuff next week and some more the next week and surgery the next week and then he can have a transplant and spend months recovering. Put that way it doesn't sound like we are getting anywhere fast but time really keeps passing and we are progressing and getting thru this one day at a time.

Getting thru all this puts new meaning to "fight against cancer" or "battling cancer" phrases. It is literally a mental fight to get thru the treatment, to keep going. I am not even getting the treatments and I have felt like putting my arms and legs up and laying on the side of the road like a bloated racoon. Not pretty, but tempting after seeing what Scott and others are up against. I am amazed that anyone gets thru it let alone so many people. I feel a lot of respect for cancer survivors.

The best way to dip an oreo

#1) Squish ever so gently the oreo.

#2) Slowly twist the cookies apart, making absolutely sure that the frosting is spread on both cookies.

#3) Place one cookie, frosting side down, onto the end of a spoon. It is supposed to stick to the spoon.

#4) Dip the spoon into a glass of milk. Soak the cookie as long as you wish.

#5) Eat the cookie. Make sure you lick the frosting off the spoon.

#6) Repeat #s 3-5 for remaining cookie.

Oh, by the way...that was a blessing

Scott's biliary drain got caught on his clothes and pulled almost out last night. Not a life or death problem but a real pain to deal with.

The dr this morning was able to get the drain in without any problem at all. Even though the drain was all but out, when he injected dye it showed a clear path clear thru his abdominal cavity into his liver and bile duct. The dr just guided his little wire right thru and slipped a new tube in. (Answer to prayers, thank you)

The dr was surprised to find a gross pussy infection right under the insertion sight and prescribed some antibiotics. Scott has had some fevers. No one has been able to figure out why so I hope this resolves that problem. One of our other physicians said that the creamy green drainage looked like mucus and wasn't worried about it. Apparently, it is a problem and I think it is a blessing the dr found it. I wouldh've just continued to ignore it till it was a crisis.

Scott's latest drug-induced dreams include some helpful inventions; a popcorn bowl that sorts out the old maids and the absolute best way to dip oreos. I won't tell you his secrets in case he wants to patent these ideas.

Lots of his dreams have a farm theme. He dreamed up a restaurant named Heavenly Chicken where chickens are killed upon ordering and a little chicken ghost floats up the side of the wall to join the other chicken ghosts. People can keep track of how many chickens were slaughtered each day for their meals.

He doesn't remember the "I went to different farms for the pigs to give birth in the back seat of my car" dream but he really did tell me about it.

There's the cow video game with udders as the controllers. To turn right you milk the right udder really fast......you get the idea.

I am sure there will be a lot more due to the fact that he is coming out of anesthesia and will be heavily medicated for several days. That's something to look forward to.

sigh.....

John and Kathy brought the kids down for the weekend. It was really great to see and snuggle them.

Yesterday, they played with cousins from Provo and Washington and had such a great time.

Today, we drove up to Heber City for the Carroll reunion. They had some great activities for all the kids; bows and arrows, handmade dolls, icecream in a bag, ring on a stick. Charlotte loved the paper and stickers but her all time favorite was washing socks on the old washboard and hanging them up on a line. It was really fun. Kudos for the organizers. I'm sure it was so much work.

Scott stayed home, well here at Jan and Bill's house. He is working on a snowflake that is to be auctioned off with other artist-decorated snowflakes as part of a benefit for cancer research. It's adorable.

It just kicks my hiney to send the kids home to Idaho and stay here. We won't be home in time for when school starts. My heart just hurts because I know they're so stressed about everything and I'm not there to be the constant that they need and I won't be for months to come. It is my deepest hurt.

Anyway, they are being very good for the grandparents and trying hard to help each other and get along. I am so proud of them.

M. and N. were so kind to check on the spider trap for me this last week. They say that only one sticky trap does not have a spider on it(there are 16) and that several have lots and lots of big crunchy hobos.

I'm just so happy when my brilliant, evil schemes work.

blah blah blah

Scott is doing fine. He had a pretty good day for most of the day and slept well. He is sleeping a lot this morning, also, which I don't mind in the least as it seems to be the only time he is not uncomfortable.

The kids seem to be doing fine at my mother's house.

We are not planning to come home this weekend. Scott's parents are tenatively planning to attend a reunion nearby and drop the kids off for the day. They will pick them up on their way home.

We most likely will not be home until the 24th of August. blah blah blah.....blah blah blah......

Shoving pills and liquids

Scott has felt absolutely terrible since Saturday afternoon with nausea, some vomiting and just today, a low grade fever. He's feels quite weak, also.

Scott recieved 2 bags of IV fluid yesterday. It helped with his passing outish behaviors. He didn't ever pass out. He was always just feeling like it.

We are told that sometimes with treatment there can be a fever. Since his bloodwork looks fine and he's allready on an antibiotic I can only shove pills and liquids down his throat and watch him carefully.

We had an appointment with an opthomologist(cross off another ist). He doesn't know why Scott's vision was blurry but his eyes look healthy. There is some residual blurriness but he is legal to drive. The dr gave him a prescription for low strength glasses but now that he might really need them he's not very interested.

On a lighter note, there were 7 spiders stuck in my super-duper spider trap when we left yesterday morning. I can't hardly wait to check on it when we get home.

Mwah! Ha! Ha!.....

I'm feeling a little evil.

I set a huge spider trap up in the basement. It involves a large wet towel surrounded by sticky traps. (By sad experience I have learned that wet towels are indeed their favorite.) The doors and baseboards also have sticky traps. You would have to be a very talented spider to move anywhere in the basement.

I have bug bombed before and it is not easy or pleasant. It leaves corpses all over and you have to wash everything down. So, I decided to opt for the most eco-friendly and energy efficient method.

They may be more eco-friendly, but I don't think sticky traps are the most spider friendly way to go. If I were a spider, I would rather die quickly by being squished or poisoned than slowly on a sticky trap. The sticky traps I purchased at Walmart do happen to boast a natural anesthetic so at least they won't be in pain. Leave it to Walmart to think of everything.

So, the kids are safely delivered to beloved grandparents(Bless You and Thank You!!).

Scott is miserable with a mixture of nausea, vomiting, hunger and a general restlessness that prohibits any sleep. Medications seem to do very little and only for a short time. I do not know how to help or comfort him. It makes the next few weeks seem like a very long time.

I am entertaining myself with delusions of a spider free house and trying to get everything packed and ready to go yet again.

I also plan to clean up the house a bit. My favorite method is to cram everything into a laundry basket and hide it in the washroom. It works.

My Two Cents

This past week was the first week that I received 5 radiation treatments in a row. Saturday was a really rough day for me. But, I am not to be pitied. My life has changed in ways that I never could have imagined. This life that we all face is designed to be a challenge. I have discovered that my Father in Heaven knows who I am and that he is in charge. I knew this before, but I feel his love more frequently and at unexpected times. The diagnosis of cancer with treatment and then a liver transplant is too heavy for one person, or one family to carry alone. We have been blessed by the love, prayers service and caring of many people. For the most part, we don't know who the people are. The best part of having service given anonymously is that when I try to guess who, I discover that there are so many friends and family that may have and would have provided the service.

I can't say the experience has been fun, but it is making me a better individual.

Soooo nice to be home

We're so glad to be home. Two weeks is a long time to be gone.

The girls are surprised at how many hobo spiders moved into their room. I'm quite surprised at how big they are. WOW!! I'm considering bug bombing the basement while we are gone next week. We've had total house invasions before. It was definitely worse before we remodeled and put in new windows. I think they are mostly confined to the basement this year. Maybe I just want to think they are all in the basement. So nasty.

Anyway, we came home to a beautiful lawn and a box of artsy get well cards from Scott's students. We feel blessed and loved.
Thank You, Thank You!!!!