just fine

Scott and I attended a children's literature conference, today. It was very nice. Scott feels better than he has felt for months. I know that he is a yoyo (aren't we all) and will certainly come down again. We will deal with that when it comes.

A good friend asked, "How are you doing with all this?"

I said, "We are fine."

"No, I said how are YOU doing with all this?", she probed.

That's a loaded question.

The current answer would have to be "just fine".

I am just fine as long as I am in the here and now. If I look back I think, "Wow, anyone who lives thru that would be a basket case when they're done." and then suddenly I really am a basket case. If I look forward I crumple into a fetal position and drool. I can only tolerate the absolute here and now, the place where I have some illusion of control.

I think that someday I will look back and feel proud that we made it. But it is not someday, and we have not yet made it.

So, I breathe ....and I pray .............and I accomplish the minimal tasks that keep the state from taking my children and committing me to a mental institution.

And then, then I let everything else go, try to mute the internal screams and hope it all works out in the end.

That, dear friend, is my definition of "just fine".

home sweet home

We all made it home today. Everyone is happily tucked in bed.

Scott is doing well. We are working hard at keeping up on his pain medication. He mostly complains about being stiff and walks a lot which is really good for him right now.

N. wanted to know when Scott would be getting a transplant. We told her it could be any time but would probably be in 4-6 months. She was so excited and said, "Good! I have so many plans. There's Halloween and my birthday. The daddy-daughter date is coming and then there is Christmas." We told her we would do the best we could and that we all have to be flexible.

We tell her that but I can't imagine my children getting any more flexible than they have allready been. They've been angels (I think) for the grandparents and have tolerated being drug from house to house amazingly well.

plastic jar bad, pain pills good

They discharged Scott from the hospital tonight on the condition that he stay in SLC until tomorrow. Scott was so happy to leave that he cried. He never wants to pee in a plastic jar again.

another day

Scott was not able to hold much food down today. Consequently, he is staying another night. He is tired and does not want to play anymore. Hopefully, tomorrow we will be able to come home where he can sleep all night uninterrupted without all the beeps.

I hear beeps in my sleep.

I am tired but I can eat. I can consume all the orange creamies from Jan's freezer and chase them down with the little "fun size" snickers in her bottomless candy drawer. I could use some "fun" because I am a little cranky and need to go to bed.

pathology results

The lymph nodes did not have cancer. Scott is now on active on the transplant list.

Our surgeon, Dr Schwartz, feels that we have some time to wait for a perfect liver. Persons with end stage liver disease sometimes have to settle for livers that are damaged because they are literally dying for a transplant. The recovery time is longer, so we are waiting.

Our hepatologist, Dr Hutson, thinks it will be Christmas or later since Scott's MELD score is only 22. It jumps to 25 on the 26th of September and to 28 after Christmas. The higher the MELD the higher you are on the list.

It has been an excrutiatingly slow and painful summer, but I still feel that we are blessed. No matter how nasty all the treatment has been, I don't think it can compare to liver failure. I think it has been an easier and faster way to get to transplant and I am so grateful for that.

Anyway, Scott should come home tomorrow. I don't know if he will be well enough to travel back to Idaho or if we will stay a day or so at Jan's. He is pretty tender with his 15 inch scar. It depends, also, if I am in any shape to drive (I am pretty well fried).

Thanks for all of your prayers.

Let's say....

Let's say that you are 9 months pregnant (Diane, this is for you) and you are having a hard time getting sympathy and compassion for your desperate condition from your husband.

Simply, kink his foley for 6 hours.

The pressure and the euphoric relief from that pressure seem to mirror almost exactly labor and post delivery. He will be forever amazed that you would ever have more than one baby.

I do have to say, that if Scott were to ever have a baby, he would do great.

Scott is moving into the sleep deprived phase of hospital detention. Since he has an epidural they check his vitals every two hours. He also has a roomate that watches TV a lot.

I guess it is alot like having a baby. Pain, epidural, sleep deprivation, annoying roommate.......

.... at least he doesn't have to breast feed.

quick note

The surgery went very well. No cancer as far as they can see. We won't find out the pathology results until Tuesday or Wednesday.

The post op recovery was excellent due to some new techniques to control pain. Scott has an epidural and a pain pump and was comfortable for the day. It is so unusual for him not to be throwing up violently after surgery and be in uncontrolled pain. Such a blessing.

I do not know what will happen tomorrow, but today was a great day. I am out of my mind tired and will write more when I am a little more sane (that may take a few months).

Thank you for all of your prayers. They worked overtime as we truly have felt carried and blessed thru out the whole day.

BG (blogger's guilt)

Ok, ok. So Utah drivers are not THAT bad. It is an adjustment to drive with so many people around. I am so used to Rexburg where a traffic jam is just as likely to have been caused by livestock as it is by too many cars on the road. I've been having BG(bloggers guilt) over complaining about Utahan's. Most everyone has been nice (not as nice as New York City, but nice).

Scott has had a pretty rough day. I was grateful we were seeing the drs anyway because he was so sick this morning. I know he is in trouble when he asks me not to leave the room and suggests we call the nurse.

Our surgeon ordered one liter of IV fluids and, after he reviewed the blood-work, ordered another. It helped tons. Dehydration has been a major problem all summer.

Both of the drs that we saw today were extremely optimistic about the surgery on Friday. Scott is, understandably, not excited.

Wednesday, we go in for Scott's pre-op blood-work and dr. appointment. The exploratory laparotomy isn't until Friday (We are stressed out of our gourds).

That leaves the whole day Thursday to pick our noses and flick boogers at aggressive, Utah drivers.

Utahan's have this built in, irritation ray that burns the back of the your head if you are not driving 85+. I feel it a lot.

Some people are not satisfied with tailgating and singeing the back of your head. Did you know that if you drive the speed limit in the diamond lane that someone in a too clean, white SUV will pull up beside you, honk and shake his fist at you?

Sometimes, it is such a relief to drive behind someone old, even if they drive just below the speed limit. Utahan's don't feel as obligated to run you off the road if it is clearly not your choice to drive as reasonably as possible.

I do not think, by the way, that it is a coincidence that Utah has the shortest waiting time for transplants in the United States.

Thank You catch ups

We're home and happy to be all done with radiation therapy. Neither of us would recommend it as a proper recreational activity.

Some thank you catch ups:

Our children have been especially patient and longsuffering this summer. We love them so much and are grateful their willingness to help. It has been a huge sacrifice on their part and they have adapted beautifully to this extreme challenge.

The Olpins have been so very kind to us this past summer. No one could compete with their hospitality or emotional support. No one could compete with Bill's jokes either, but we're not complaining.

Our neighborhood and ward family has been fabulous. Our lawn has never looked better and we are still eating off the 40 or so pounds of meat they precooked for us at the beginning of the summer.

Our parents have truly endured this trial with us summer as they have parented our children in our place. I love that the kids had plenty of jobs to earn their privileges. We have such great parents.

The phone calls are always appreciated. We love to hear about anything strange or funny going on in other people's lives as it is a great distraction.

We are so grateful to the faculty at BYUI for their love and support. The amazon gift card has been put to great use.

The cards and packages have been great, thank you. Scott's students, past and present, pooled together original artwork cards. Our favorite package was from Jared. He sent a load of See's candy and a bigger load of dental supplies to repair the damage.

A special thanks to Emmalee, Lily, and Hydee for responding to my blog. It is nice to know that someone reads the trash I write and I love reading what is going on in your lives.

Thank you to everyone else that has blessed our lives. We love you and are grateful for all that you do.

How, exactly, do you pray for a donor?

I am happy that Scott slept well last night and has had relatively no nausea with this new radiation.

He was wondering why it makes him so tired. In my mind I am thinking, "Because they are killing off your liver."

Two more treatments and we are all done with radiation. That just leaves the surgery next week and the transplant. Sounds simple enough.

I am praying that a donor presents itself while he is in surgery and he just wakes up with a new liver.

So, if you pray for a donor to come quickly, do you pray for someone's demise to come sooner than it wouldh've been had you not prayed? Do you pray for your donor... or just their organs? To be sure, you must pray for their family.

Traditionally, prayer has been more of a casual habit/bedtime routine from my childhood used for venting and making repetive requests.

Lately, I have truly felt the powers of heaven move on our behalf in direct and prompt response to my prayers. So much so has this been, that I have had to reevaluate what I pray for. Since I am sure to mess everything up, I think it safe to state what I think I need, but pray for God's will to be done...........Well, as long as it fits in with what I want:)

Some chicken with that grease might be nice.

I have been feeling pretty worn out......Ok, so I have been a little depressed...............Ok, ok, so I am basket case.

This summer has just drug on and on. I can't hardly remember life before all this or imagine being all done.

I was feeling picked on until we went for treatment this afternoon.

There was a 60ish woman holding a baby that couldn't have been more than 2 months old. She had a 4 year old boy playing on the big, wooden puzzle cube thingy in the corner. Her son entered the waiting area and called his neighbors to have them meet the kids when they get off the bus because "things were running late". So he had at least 3 young children and a newborn.

They wheeled out his wife from treatment. She was about my age and build, but totally emaciated. Her eyes were hollow, dark circles and mostly vacant. Too weak to walk, and too drugged to think.

I felt the blood leave my lips and realized that this, what Scott and I are dealing with, is nothing. Anything we've been thru doesn't even hold a candle to that.

It's pretty humbling and it hit me hard.

It was too big a challenge to not cry the whole way home so I settled for half way. It made me crave the only true comfort food I know.

Now, since I just ate most of a bucket of fried chicken last Friday (enter southward migration of buns), I figure that it is just asking to have a heart attack by midnight if I do it again today. I settled for 4 chicken strips from Arctic Circle and a fudgesicle from Jan's fridge and am still fighting the pull of Smith's deli down the street.

I don't really care that I am not hungry, I just want to eat.

Scott is sleeping. Usually, he is fighting off nausea and terrible abdominal discomfort about now. Perhaps, since the stomach doesn't get zapped with the internal radiation he won't get sick. I vote for that.

I vote that Scott sleeps peacefully the rest of the week, waking only to finish out these last 3 radiation treatments. All in favor?

so, so

So, it's my birthday.

I've had better birthdays.

When I was 7ish, my whole family pretended it wasn't my birthday but held a big surprise party that night with a cake decorated like a patchwork quilt.

For my 16th birthday, we went to the Jets concert at Ricks College.

Eddie Pincock took me to the Blackfoot fair for my 18th birthday. He kissed me at the top of the ferris wheel right before I leaned over the side to throw up.

There's a couple other birthday memories but they are just kind of blurred together into one collective birthday.

It hasn't been a bad birthday. M. made the most unique card I have ever received. She turned a gallon plastic bag inside out, wrote a sweet note and turned it right side out. She then covered the back with duct tape so that the writing would show up. It's really something. I stole a little tape off the back to stick it on the fridge.

Lots of loves and hugs from the kids before we left this morning.

Both my mom and my mother-in-law gave me cash which I am hoarding until I find just the right clearance item to spend it on.

Really, once you're over 30, birthdays just aren't that fun. You just get older and flabbier. It's hard to tell where your buns end and your thighs begin (Oh, never mind, I just found that point. It's that crease behind my knees). I've started to notice wrinkles that can't be attributed to smiling and the store clerk last week called me ma'am. I feel old and crabby. I feel like I know things that only really old people should know (like my sister who just turned 38). I'm having a hard time celebrating all that.

Scott will finish radiation treatment this week. He is just holding on trying to get thru today and then the next and then the next.

I had no idea that cancer treatment would be this harsh. I assumed that the physical aspect would be difficult. I didn't anticipate the mental/emotional price to be so high.

to be continued......

Scott has a new infection with the biliary drain. He has been miserable for the last few days, hurting joints along with everything else. I hauled his hiney in yesterday for a shot of rocephin. I am hoping he will feel better tommorrow.

I am tired and overwhelmed.

M. has been a huge help to me here at home. We cleaned the house together and she is in charge of the laundry. She takes on a lot of responsibility and does her best to keep everyone happy. I am so grateful to have her.

To be fair, N. wiped the kitchen down and JA has watched C. I have had great help.

We leave Tuesday morning to have Scott's drain replaced with one with two lumens, one solid for radiation and one with holes for drainage. Wednesday, Thursday and Friday are for brachytherapy where they advance a radioactive wire into Scott's liver using a robot.