enough

I think it is really easy for the dark side of people to come out when their stressed. I say "people" but that doesn't really apply to Scott. He has a down side, but not a dark side. I'm fortunate to have him because he offsets the ever looming black hole on my side.

My sister, Jan, counseled me not to blog my darkest, most ominous thoughts. I think she's right this time.

I have lots of good, rational reasons, like the weather, to stay in SLC this weekend; but I won't bore you to death with them. My irrational reason is that I am tired of all this. Come heck or high water, we are here for a transplant, and this weekend is as good as any to get 'er done. Enough is enough.

So, we're here at Jan and Bill's house, just leeching off their hospitality. We laugh a lot, so maybe that's why they tolerate us. Scott's a bit more stable; maybe I'll cook this weekend. It's simply impossible to even the score, here, but I can try.

Low visiblity, slick, slick and slush

Low visibility, slick, slick and slush; there's all these 4x4 pickups whizzing past and tromping up that hill. We're in John and Kathy's bug spinning the whole way, and I'm singing primary songs and praying like a....... I don't know what it was like, but it was sincere and intense. Scott may have teared up when he was discharged, but I teared up pulling into that blessed driveway. Thank you, Lord.

The hospital stay was more pleasant than usual. They only hooked the IV up for antibiotics, which eliminated a major source of beeps in the night, and they made a concerted effort not to wake him if he was sleeping.

It's sad when all the aides and most of the nurses recognize us, even to the point of remembering our names. It's nice, though, having a good relationship with the staff. They're less likely to blow off your concerns if they've seen what you've been thru and proven to be solid.

The highlight of the weekend was Kari and Dawn coming to visit, and Jan and Bill bringing a full on turkey dinner. Membership in this family has such great privileges. You'd have to be crazy not to feel the love in this family. Thank you, it really did make having to stay much better for Scott.

Scott is still sick and yellow, but doing better, I think. We are so very grateful to all our family and friends for fasting for us. We have felt your prayers on our behalf and feel loved and supported. Thank you.

Scott got worse, then better, then worse, then a bit better, then bad. So, I brought him to Utah. He's been admitted to the hospital and thru several tests to find out why he has pain, fever and is quite yellow, but they still don't know what's up with the man. Everyone is unanimous in agreeing that it is way past time for a transplant.

Sometimes I can only think to be grateful that time passes, that this too shall pass. Tonight I have several reasons to feel grateful.

I'm grateful Scott is sick in Utah, not Idaho. I almost didn't bring him, thinking it wasn't too bad, but it was worse than I thought.

There are approximately 400 people fasting and praying for us on the morrow. I can't even tell you how humbling that is, but I am so grateful for each and every person who loves us enough to do that.

I'm grateful to be here at Jan and Bill's house, because I am a basket case, but they make me look a little more sane by comparison........joke, ha, ha, ha........ No really, I don't know what I would do without them.

numb

I don't think the small box of deli chicken and 5 clementines I ate for breakfast can count as emotional eating. I didn't feel any emotions. I didn't even feel full when I was done.

I didn't feel a thing until 11am when I picked up Naomi for her podiatrist appt. I know it's because she just had her teeth pulled, but if a dead horse could breathe, oh mama, that's exactly what her breath smelled like. So, it was nausea that drove me to Walgreen's for mints, but it was stupidity that locked my keys in the van.

I'm pretty numb, today, but I feel plenty of gratitude for near and dear friends that are happy to save my day. Thank you, thank you, thank you.

So, Scott is plenty sick from the chemo, I am presuming. I am a little more than concerned since he seems to be turning yellow. But if he is not running a fever, or at least having significant chills, I don't think there is much to be done about it. The last thing I want to do is drag the man in just to hear the dr to say, Yeah, waiting for transplant really stinks. Deal with it.

weathermom gets it wrong, thank goodness

So, it turned out to be a nice day. N. woke up with sunshine in her soul, and was perfectly happy to go with the other kids to grandma's for the day. The miracles never cease around here.

We did dr appointments, IV fluids, and took N. to get two teeth pulled. Kathy fed and put up with everyone all day. She saved me.

We just got home. M. went right to bed because she has a bad cold. N. went right to bed because she stayed up so late and had a long day. Scott went right to bed because he has had only had 3 hours sleep in the last 60 hours. C. went right to bed after reading Muncha! Muncha! Muncha! and Jesus stories. A. is watching Nova on public television at the cost of not being formally put to bed. I'm exhausted, for some inexplicable reason, but am enjoying some alone time.

severe storm warning.

It's -20 degrees with a windchill of -34. That's bad, real bad news for a mother that has spent the three day weekend gritting her teeth and craving deli chicken.

N. is going to be particularly disappointed. She stayed up until 11:30 finishing a report on worms that was due December 14th. I told her that I loved her so much that I would give her every opportunity to get it done, even if it meant that she would miss her field trip, bowling, this afternoon. (It does not pay to ever get mad at N. If I can keep my cool and turn it into a sincere, because I love you, statement, I can usually avoid the nuclear bomb.) I'm grateful she took me seriously, because what a pain it would be to follow thru on that threat. Emotional forecast.......severe storm warning.

Anyway, Scott was up all night with ulcerish pain. Yesterday, our local oncologist ordered viscous lidocaine and said that if it got too bad we would have to consider stopping the chemo. I keep praying that we'll go for transplant and not have to deal with it, but it is to no avail. The discouraging thought for the night was; God deals in millions of years. I'm praying for a transplant within the day, and He's thinking that's anytime within the next thousand years.

The attitude adjustment of the week was brought to me by the online, cholangiocarcinoma support group. You go thru and see pictures of beautiful people with beautiful families who have died or are dealing with cholangiocarcinoma. I cried and cried, but left with a resolve to complain a little less, since we are going thru all this together and Scott is going to live.

For the record II

Great aunt LuAnne is perhaps the brightest old person I have ever met; brightest and happiest. It was Uncle Wilford's funeral, and you would've thought that that she might feel really bad that out of the 12 children just her and Grandma are still around...... wait, I think Hazel might be alive, but I can't quite remember. Anyway, she was genuinely, wonderfully light, yet so grounded and real. What a treasure.

Speaking of funerals, I think it is really cruel to make the grandchildren/cousins sing at the funeral. For the record, and as a final gift; I'm letting all my posterity off the hook....... you're welcome.

Well, there's no impending crisis, except that the chemo is really kicking in for Scott. It takes such guts to take chemo; knowing it won't kill you, but you'll wish you could die. The motrin used to take the edge off, but it's hurting his stomach. I'm not sure what we'll do.

I sure wish we could go for transplant, already. But then, you already know that.

Lysol, please

It was fun to show Jan how to index. Hopefully, indexing will take the edge off the mormon girl guilt we both have from not doing genealogy/building-the-kingdom-of-heaven type activities. I'm especially excited because it's something constructive I can do anywhere, even in the hospital.

Tonight, I rediscovered why I hate McDonald's playland. It feels like you're eating in a bathroom, and there's not enough Lysol in the world to fix it.

Scott started a new round of chemo this morning. He's done ok with it.

Currently, I'm fried about twice the normal life fried, but only two mirrors past "Mahana, you ugly!" So, things are looking up.

nothing

I kind of feel bad. You come to read my whine/vent board, everyday, and here I have nothing to complain about.

Hmmm.......

The kids were fighting..... no, that's normal. Nothing new there.

The house is a mess......... ditto, nothing fun.

Oh! N. got her braces and reverse head gear installed. She's a tough cookie. She always impresses me with her stubborn grit.

Also, I'm all set up for indexing the Missouri 1850 census. I did two pages and loved it.

Other than that, I'm at a total loss for something interesting to share. I guess, sometimes a good day is defined by it simply not having been a bad day.

a good email and a good job

On Jan 16, 2008, at 3:23 PM, My sister Jan wrote:

Just read your blog. Wanted to lift your spirits with a mom type story of poop. I walked past my downstairs bathroom and noticed something unsitely sticking up out of the toilet. (No kidding, it was sticking up out of the water.) What the!?!!! "Landon, did you poop in my toilet??" Yes he did. If you have never experienced a Landon poop, please let me elaborate. He only poops every couple of days and I think he must save them for my house. They are bigger around than the hole in the bottom of my toilet and about 12" long. I am not kidding and there was more than one. I retrieved my toilet plunger to break it up because there was no way it was going down like that. They were SO hard that I couldn't get my toilet plunger to break them!!! I said a prayer, crossed myself and let it flush. Bad news. It all clogged right at the opening like a suction cup. I had to find something to break up the poo, something that I would never need again for anything. I walked around my house in a daze analyzing anything that might work. I had almost settled on a screwdriver. I figured I could boil it clean. Then, I looked out my window and saw a long stick about 5 feet long. It was like a ray of sunshine beaming down on the lone stick. Perfect!!! I retrieved the stick and hauled it downstairs and then I took to that poo like a .......I can't think of anything comparable right now, but it was real bad. As I chipped on the poo with a 5' stick some of my children wandered by and asked what I was doing. Like they have to ask!! When I was done, I felt like a champion of my own toilet. It, however, looked like it had been attacked by a dozen no-bake cookies. Oy!! I then had to dispose of said stick so it didn't turn up again in a game of swords, jedi, or worse case scenario-- hot dog roast. I bundled up and hauled that stick into the back 40. It should be safe for 3-4 more days.

jan



Thanks, I needed that.

I'm doing better, but still relatively fragile. Mom and Dad came over, today. Mom showed me how to index genealogy records. Mom said indexing is a good job for me because you can be brain dead and still index. I figure I qualify pretty close to that, so I'm excited.

maroon legs and big pregnant bums

I was walking in my room. I couldn't see with my glasses off, but it looked like a bunch of ants were carrying little pieces of something in a huge procession under the door into my closet. I found my glasses, the vacuum and returned, only to discover they were not ants. They were spiders; spiders with maroon legs and big pregnant bums marching into my closet. I looked around and there were more, millions more, and all different, crunchy kinds everywhere. I was too panicked to even scream, until I realized, Hey! My closet does not even have doors. This is a dream! And then I was mad. I woke up mad.

I had gone back to bed because my brain is in hell, today. It must be bad, because even my dreams found hell.

We were called with a potential donor around midnight, last night. After spending the night thinking that we probably/might be going for transplant today; making tentative arrangements with grandparents; and coping with the children's high emotions of us maybe leaving, they informed us, this morning, that the donor didn't work out. The disappointment was crushing. At least we were not in Utah, when the notice was retracted. I think a nervous breakdown in the UHU waiting room would have been much uglier.

It's in everyone's best interest for this kind of ugly to stay home. It surpasses my usual, "Mahana, you ugly!" by at least ten broken mirrors. I just feel bad for everyone else around here. Perhaps, John and Kathy could set up some kind of refugee camp for man and children to escape the horrors of the Beast till it wears out, cages up, and the mother decides to return.

I actually feel so much better having said all that. Thank you.

It's nice to be home

It's nice to be home. Scott's tender and guards the drain from being jostled, but seems to be doing better. I hope he can get comfortable enough to sleep. Sleep deprivation sucks out all the sanity you didn't even know you had.

I don't have anything to complain about. I'm pretty content to sit exhausted in a quiet house while everyone else sleeps or pretends to sleep. Scott's condition is currently tolerable. The kids are good, albeit a tad bit insecure. Laundry's done(thanks Kathy). House is fairly clean. It's cold outside. I can deal with this.

not a democracy

So, there is another perk to coming to Utah. Instead of driving home tired and late, we are staying on the way at Nefi and Kathy's house. I'm grateful for all of our friends who have supported us, and these friends in particular have been dear. It's been a nice visit, thank you.

I think it is harder to believe in God when he doesn't give you what you want. In dealing with a theocracy, it doesn't really matter what you want. It doesn't matter, either, if everyone here votes that this has gone on way too long, and that God should fix this up nice, neat, and right now. If you're going to really believe in God, it only matters what God wants.

Up close, I feel like giving God up. I'm sick and tired of having no control, living moment to moment, and yo-yoing all over the place. I've wondered in the past how a person could not believe in God. I can't articulate exactly why, but I understand much deeper, now, how a body could be so frustrated into losing their perspective; losing their faith. It's actually tempting.

I don't have to back away very far, though, to see God's fingerprints all over this situation. We've just been so blessed, so very blessed. I have to trust that He is in control, He is working for our best good, and we won't be abandoned.

I guess I need to back up a bit more than that in order to be grateful. While it's nice that the drain didn't need to be changed, I'm so frustrated that Scott still has near constant, expletive drain pain that will not be going away until transplant; and that transplant promises to be no picnic. If nothing else, I can always be grateful that time passes, that this will pass.

I wonder how good all this would look if I backed up all the way to New York.

here we go again

We're off to Utah to get the drain changed. At least we get to see Jan and Bill, but that's the only perk.

an unpleasant prediction

Scott's drain still rates #1 on my sworn at list. It's leaking like crazy and Scott feels like he is getting poked inside. Just bumping it doubles the man over, and he has started to itch, again. It's been a very uncomfortable day.

I was going to predict that we would be going to SLC tomorrow, but I would rather predict that they will call us for transplant, tonight, and save us the pancreatitis of changing out the drain.

I'm praying so hard for the call. I just don't know how much more of this I can take........... I hate that damn drain.

Thanks Jan and Gerald

It's such a good thing that my sister and her husband came last night. We got the table in, down, together, and finally on. I didn't anticipate it being so major. There's no way I couldh've done it without them, and I was so grateful to Gerald who groveled to bolt the thing to the base.

There's been such a decided lack of endorphins and fun at my house. It's nice to see Scott spark at playing air hockey, and M., who has been significantly depressed, feel markedly better with just a little exercise. Also, it gives me leverage for the kids to get their homework and housework done. I'm not really into things and big purchases, but I feel strangely satisfied with these.

Today, would be a great day to go for transplant. It hangs over us like extended family gas. It's uncomfortable and looming. I would love to clear the air and start fresh. I wake up every single morning and wonder if today is the day, and then it isn't. Please, Lord; granted, my house is a bit more fun, but we'd really like to progress, someday.

I was contemplating what a purgatory it is waiting and waiting, without going anywhere. Hell is probably filled with people just waiting. It hit me like a brick that my ancestors are in a waiting purgatory; waiting for me to do their temple work. They have to be linked, sealed together to the big family in order to progress. I feel a more urgent connection to them that I haven't felt before. It's as if I can feel their anxiousness. I could be researching while we wait. I could be doing something really important.

child's play

Yesterday, I found that the airhockey tables at Sam's club went half price. I was so excited that I bought one, only to discover that the 5'x8' box would under no circumstance fit in my van. So, I returned it.

Today, a dear friend was kind enough to bring her truck and haul it back to our house. It's a huge, 300 lb kit that requires some kind of advanced degree to assemble. The kids are hopping excited. A. cried and cried because our friends aren't coming until tomorrow to help us get the top downstairs. I just hope we can get it down the stairs.

As if the airhockey purchase wasn't manic enough, I also purchased an elliptical trainer for Scott. I can easily justify this purchase as a medical necessity, and don't feel even a sprig of buyers remorse.

I haven't tried to assemble it, yet. It's as terrifically complicated as the airhockey table, but I don't care. It's just a relief to do something constructive; non-crisis related. So, bring it; the challenge will be child's play compared to the last year.

Scott is finishing a piece of art everyday and posting it at scottefranson.blogspot.com. I love these new paintings. It seems a great luxury to have him creating after months and months of artistic starvation. I'm so grateful for this reprieve. Even if it proves to be temporary, it's a huge blessing.

Help me rate this book

So, I need everyone to click on the little lookybook logo and go rate Scott's book, but only if you will give him 5 stars. It just boosts his ego if he is rated high. Thanks.

For the record

We went to a funeral this morning. It is not my habit to attend funerals. Usually, at the most, I will go to the viewing, but this was a little different. She was old and her family is small and reclusive. They just needed support. I was grateful Scott came with me. I guess I needed support, too.

For the record, when I die, my funeral had better not be longer than 30, 40 max, minutes. I want a song, a prayer, a heartwarming "Praise the Lord" talk, followed by a reasonable amen. There's no need to torture everyone into a death wish with a breathy funeral.

It's late. I'm tired, but it's a good tired. Several sisters and their families dropped in for dinner, and we all went bowling. Scott didn't bowl, but I'm so glad he felt good enough to come.

a good Sunday

A good Sunday involves the new teacher quoting your 4 year old as saying, "Chase, you make that ugly noise again and you're going to put your nose in the corner." And having C. come home saying how she got bit by Chase, but doesn't know why. She didn't do ANYTHING, but is sad that she forgot to say abracadabra and turn him into a frog.

A good Sunday involves your son looking up at you to say, "Mom, prayer really works. You have a mustache." I think those were two random statements put together, rather than him saying that he prayed that I would have a mustache and his prayer worked.

.................... Hey, I have a mustache?

Scott's doing pretty well, today. I suspect he didn't take the chemo, this morning, but it has been pretty nice to have him up and around. So, it's been a good Sunday....................... Well, good enough for me.

In Brendese

While shopping yesterday, I ran into an old friend. I've seen her several times this last year. I know she will be upset when she finds out about Scott, but it takes so much energy to explain all this, and then I will feel like I need to comfort her. I'd rather be happy to see her and say we're doing just fine; which is only a lie in normal English. In Brendese it means; we are hanging on by the skin of our teeth, but things will work out in the end.

I woke up this morning with an emotional migraine. In Brendese that means; the inner Beast reigns supreme. Trust me, you do not want to cross the Beast. It's pleasure is to eat and regurgitate husbands and children*. It's so much less damaging for everyone if I just curl up from the very start, and sandwich my head between the pillows till the brain scream goes away. It's always painful for a few hours, but at least it goes away.

Scott is making progress on his book. It's about mosquitoes that eat fruit, mix colors, and then die. It's a warped "circle of life" kind of thing, done really cute. I can't tell you how happy it makes me to see him working on something.

The day has ended pretty well. The kids are having a "late night" with friends and games. Scott went to bed uncomfortable, but manageable. And, I am doing just fine; both feet in Brendese, but leaning heavy into the normal English definition.



*It's favorite fare, by far, is telemarketers.

another good day

Is there anything I wouldn't buy if I thought it would make Scott more comfortable? I think not. Is there anything I wouldn't do? Well, a couple of things, but not many. It makes more sense to me now, why my father would eat rum soaked raisins, or drink horse-shit tea to try to help his arthritis. There's this feeling that there must be something out there that would help, a remedy, anything.

So today, I bought a maroon recliner for Scott. Honestly, I wouldh've purchased one months ago if I thought it would make him happy to tears, but it was a difficult purchase. There are so many hideous recliners and they are built, mostly, for shorter people. Thankfully, I had plenty of help. Those lanky salespersons were thrilled to try out all the recliners I pointed at.

I took the kids to the temple open house this morning. We have tickets for the 19th, but I am hoping that we will be gone for transplant, and I wanted to go with them. We didn't have tickets, but they let us go anyway, no problem. It made them late for their first day back to school, and it was well worth the tardy. (The invitation still stands for anyone else, stranger or not. We are happy to make housing and transportation arrangements if you can make it to the Idaho Falls airport.)

Temple open house + kids back to school + Scott doing artwork again + successful recliner purchase = another good day.

An all time high

Today was a good day.

Scott worked for several hours which is fabulous, because he hasn't been able to concentrate much at all. I took the kids sledding and out to dinner.

It's not usual for us both to be functioning at the same time. We've been so fried, between us we are lucky to add up to 3/4 of an adult. I think we hit a cumulative 1 5/8, today; an all time high since we started with this ordeal.

Yep, it was a good day.

wow

There's only one thing guaranteed to happen when you get the sisters together for a big party................ bad gas. I'm surprised EXXON hasn't identified the mushroom cloud as a significant, renewable energy source; wind and methane all in one. We probably have bad gas all the time. It's putting the seven of us all together in the same, enclosed room with a pan of artichoke dip............ wow.

I feel pain looking back on 2007. It feels like I haven't accomplished much. I guess sheer survival is a pretty hefty accomplishment, but I don't feel satisfied. I feel frustrated. So much of this last year was spent sitting and waiting: waiting for procedures, waiting for results, waiting at the pharmacy, waiting for pain or nausea medication to kick in, waiting for the dr to call back, waiting in the waiting room, waiting for the IV to infuse, waiting for someone's untimely demise, waiting, waiting waiting waitingwaitingwaiting, WAITING!!!!!!!! I hate waiting. I am not graceful at waiting. I am getting less graceful at waiting by the minute. The Lord might want to try something different, RIGHT NOW, because this "little exercise" in waiting has been beaten plum to death.

...... sorry, just had to pass that tidbit of emotional gas........ wow.

Scott is on day 5 of the two week chemo cycle. It's not pleasant. Something about killing off your own cells is very depressing to the mind and body. It becomes one of those exquisite purgatories you wish you had only heard about. I don't recommend it to anyone.