Good ridance 2007

It's New Year's Eve. There's not many words that my mother would approve of in trying to articulate my feelings about the 2007 year, right now. It has been the absolute longest year of my entire life. True, so true, we've been blessed and it is a miracle we have survived, but right now, I am tired and whiney. I want to be done. I want my husband back, and I'm enjoying this puddle of self pity oozing out of my eyeballs. I'm sick of 2007. I'm going to bed till it's over and done with. So there.

An invitation

I am grateful M. was able to volunteer at the temple open house this morning. They asked for volunteers a month ago, but I really didn't think there would be any chance we would be here. She helped people with their booties, so I guess you could call it bootie duty. :) It's nice she could go last minute.

We've been asked to invite our friends to the open house of the Rexburg temple. There are tours every day for the whole month of January. So, if any of you are interested, if you can get here, I will arrange housing and transportation for you to come to the open house. This invitation is not only to my personal friends, but to all you lurkers. Perhaps, you are coming from the psc support group, or from somewhere else. No matter, I only know the city where you log in from, and there is a good lot of you. You, yes you, are sincerely invited as it truly would be an experience you would never forget, and an opportunity that may never present itself so openly, again. My cell # is 208.201.4615. We would be honored to have you.

We woke to 8 inches of new, fluffy snow up at the cabin. As my mother would say, "If the bunnies farted in the same direction, we would be snowed in tight." With the issued severe storm warning, the last thing we want is to be trapped in a remote cabin with no hope of rescue till Monday. The snow on the road was was already deep enough to be shoving it up, over the hood of our van as we plowed thru to the main road, and it was still coming down. No one else was waiting for a transplant call, so they didn't mind getting snowed in. It was just a bummer to drag the kids out of a really good party.

So, it's a snow day. We'll have a good breakfast for dinner, to make up for skipping it this morning, and build with legos till we've used every single one. Any kids that need to bicker can take their energies out on the drifted driveway. It should be a fine day.

An unusually good day.

The kids cleaned their rooms really well, under the threat of staying home from the big family retreat, this weekend. They are so excited, I am pretty sure I could squeeze a clean house out of them before we leave tomorrow.

So I am told, pregnant persons and liver transplant hopefuls get their own room at the cabin. Thank goodness, none of my sisters are pregnant and have to share a room with Scott. :) I know Jan and Leah have worked hard to get it all together, thank you.

Tomorrow, Scott's MELD score jumps to 28. I hope it's high enough to get us to transplant. Hopefully, we are #1 when we get the next call. I don't know if I can handle being #2, again.

It was a really nice day. We went out to Applebee's for dinner, where C. announced, "I burped-ed up my nose, and it's yelling, HOT! HOT!" The kids really enjoyed their food: mini-hamburgers, mac-n-cheese, and a grilled cheese sandwich. M. chose a more sophisticated shrimp pasta dish and loved it. My food was good, but Scott does not ever wish to eat at Applebee's, again.

I think that the next time we go out it will be on a Wednesday, when the kids meals are only $.99. If we leave Scott home, and M. and I share a huge dish, it would, overall, cost the same as McDonalds; but I wouldn't have to eat really nasty food.

As predicted, Christmas morning was great fun, and we went out to my parent's house for the big family party.

I purchased wood, IKEA boxes that screw and nail together. It's been great fun to assemble them with the kids. I love that it's the hands-on things that they like the very most, the crafts and legos.

C. is quite happy with her new backpack of games. She's at that magic age where she understands rules, and fair play, but doesn't care who wins. I didn't anticipate her being so good at Memory. I probably just forgot how bad I am at Memory.

It took 15 minutes max to take down the tree, decorations and clean up the Christmas morning mess, today. Months of preparation and anticipation were vwupped, sucked tight, into a big rubbermaid container, and shut away for another year. Maybe, I should have left it up a bit longer. Instead of a holiday mess, it is a dismally, normal mess.

Scott surfaces occasionally from the computer room or napping, mumbling something about wanting a liver. He hasn't been sleeping at all, and doesn't feel good. I would take him in for IV fluids, but for today, he refuses. There's not much I can do for him. So, I think............. I think I am going to have to ignore him and keep playing with the kids. He usually does better if I am not hovering, anyway. At least, he had a good day, yesterday.

just this one thing

I talked with the transplant coordinator last Friday. She said that the people who are being transplanted right now have MELD's of 30 or higher (Scott's is only 25). They recently lost a man who's MELD was over 50. Considering how very sick a person is with a natural MELD over 20, 50 is past my comprehension of pain and suffering. Scott is uncomfortable, well, sometimes downright miserable, but he is stable. He's not dying. We are both feeling more content to wait.

N. was on a war path all day, determined to find every reason not to be her jolly self. She turned sweet, though, for snuggles at bedtime. She asked me what I wanted for Christmas. It gave me the perfect opportunity to share with her my wish, my deepest heart's wish, and was followed by the most honest and sincere conversation we have ever had. It's something I don't want to ever forget.

My aching desire is for my children to understand how to qualify for grace. I want them to know, to taste, how easy it is to pray, read the scriptures, and keep the basic commandments. If they are diligent in these little things, they can pray with complete confidence, knowing God will hear and answer their prayers; and thru the atonement, their best efforts will be made complete. It's the absolute core of Christianity, and I was clueless about it most of my life. If I could give just this one thing, grace, to my children, I know they will make it no matter what.

Christmas promises to be great fun. C. still believes and loves Santa as much as she loves Jesus. N. wrote an apology letter to Santa, nervous that I might follow thru on the threat of giving her presents to the homeless shelter. M. went to bed confident her stash was safe, having lavishly brown-nosed the North Pole all day. A. was the only one awake when two big bags of gifts appeared on the doorstep and proclaimed it to be a Christmas miracle. Very fun.

I have a compulsion. Any book I start to read, I have to finish before I can set it down. Fortunately, I can read really fast, but I have to be careful of what I pick up. It would be better if I could remember, for more than a day, what I read. The advantage of having such poor retention is that every book is new until after the third, or even fourth, time I read it.

So, last night was spent with a book. Today was spent before it began, but I still managed to get what needed to be done, done.

Scott had a good day. The new medication for gastritis seems to be helping quite a lot, making it well worth the investment. He has slept the last 2 nights.

A special thanks to all our family and friends, who have been so kind to provide much needed diversions these last few weeks. Thank you, thank you. I hope you know how much we love and appreciate you.

pure torture

Our surgeon thinks Scott has gastritis. Gastritis translates easily to: "I don't know what it is, but try taking some really expensive medicine for it." I'm hoping it will help, because I need him to be reasonably comfortable, and at least sleep at night. Ok, ok...... so I can sleep at night.

Today, I was kidnapped by sweet friends, forced to eat good food, and shop clearance racks at Kohl's. Torture, pure torture; I can hardly wait for it to happen, again.

Replaced by a blog

I think it awkward to run into your psychiatrist in a public setting. Someone, with that much inside information on other people, shouldn't be let out. I haven't seen him for quite a while. Perhaps, I should tell him............ he's been replaced by a blog.

Ironically, I sorely needed some sanity, today. So, I went to the temple. I love working in the temple. I love how the searing weight on my heart peels off and is replaced with simple contentment. There's no medication on earth that can duplicate it. It's a sweet relief I don't find anywhere else.

Scott's dad took him to get more IV fluids, today. He is feeling better, but doesn't feel good. I wish I knew if something were wrong; something that needed to be taken care of. Things don't feel quite right, but his symptoms are so vague and his labs are fine.

without a clue, but still caring........... well, mostly

Someone, who is stressed way past the point of caring, might seriously consider running naked thru the streets, yelling; "SAVE ME, SAVE ME", as a way to shift the stress to something less critical than what is actually going on.

I'm clearly not to that point, yet. Just in pondering such behavior, I have to poke out my own mind's eye, so I really do care. I must be getting closer, though, to be thinking about it.

Scott is no longer in pain, but has been terribly miserable with nausea and vomiting. I'm so grateful I took him, this morning, for labs and IV fluids. Otherwise, I would be taking him to the dreaded ER tonight. His labs are really good, so I guess we will wait and see what happens.

This situation gets so stressful, I think I am going to pop. But then, I remember this morning. I remember even writing, "God is with us.", and it becomes a big, "Oooooh! I get it. It's another: get strengthened, then flattened, cycle". I shouldh've seen this one coming. At least I can be grounded, without a doubt, that God is in charge and knows what is going on, even if I don't have a clue.

It's difficult for me to lay aside sarcasm, but I must for just a moment.

I'm so grateful for prayer. It's such a gift from God. What a privilege to pray for help and receive help, sometimes instantly; or pray for strength and walk with humble confidence that it will be provided. Grace given thru the atonement is so real and so precious, all this seems a steep, but worthy price to know and feel that.

With Scott in so much pain this morning, I got the kids off to school and made arrangements for C. to go to the neighbors. I called our good friends to give Scott a priesthood blessing, and braced myself for today's battle.

Scott knelt down and prayed for the pain to be taken, and it was, instantly. He was significantly improved by the time Hyrum and Tahari arrived, and was given a blessing of peace and strength; that these trials are specifically designed for him to come closer to his Savior and to know God. The Spirit was strong and Scott was comforted.

I don't know what will happen, today, but I know it will be ok. God is with us. I know He's with us.

blah blah blah

blah, blah, blah......the biliary drain jerked out 4".......... scott sore, but determined to not go to SLC for any reason other than transplant............... christmas dinner at john and kathy's cause we might not be here for the real christmas dinner.............. 4 year old complaining, "mom, you're not snuggling anyone, you're supposed to be snuggling us, REMEMBER?".............. blah, blah, blah............. by the way, dinner was great, and the afternoon pleasant

bitter-sweet potentials

December 17, 2005, we had a kitchen fire. It was a blessing because, as one friend put it, "It was such an ugly kitchen, it deserved to be burned." So, it was a bitter-sweet experience that involved gutting and remodeling not only our kitchen, but both bathrooms. The remodel is still slowly spreading out to the rest of my homely house.

December 17, 2006 was also traumatic. JA started having seizures at bedtime. Coupled with his severe headaches, I had graphic imaginations of inoperable tumors. Luckily, they turned out to be benign rolandic seizures. If you have to choose a type of seizure for your child to have, I would recommend this type; they are not harmful, respond to medication, and go away at puberty.

December 17, 2007 is Monday. It holds the greatest bitter-sweet potential of the three. I'm a little anxious, and actually hoping a bit that we don't get the call until after Christmas. I think it would be better for the kids, and I hate thinking that our donor family will be grieving during the holidays.

I never considered that we would be still waiting. In my mind, I had scheduled Scott's transplant for September, and that he would be going back to work in January. Bummer.

Anyway, we are hanging in there. Scott is tired but ok. He stops the chemo next Friday, which will give us the week of Christmas off of chemo before he starts again.

It's a good day when Scott eats a lot, you laugh with dear friends, and everyone prays for you.

it's snowing

It's snowing. Logically, I know that people die all the time. It's not our fault if someone dies, but emotionally, I'm distressed for our donor family. It's snowing, and it's slick, and it's the holidays. I'm gagging with panic for them, but it's a waste of energy for me. We are still waiting and it's still snowing.

I wish I had something useful to blog, but I don't, really. I'm just out of grit.

It was nice to go to the temple with Scott, this morning. It always pulls things into perspective and gives me much needed peace.

Currently, Scott is working up courage to take chemo. JA is enthusiastically dissecting a broken, digital camera. N. went to bed in the face of homework. M. went to mutual to decorate gingerbread houses. C. is getting her pajamas on, with high hopes of being snuggled with lots of books. I'm not craving anything in particular, except perhaps, a satisfying sleep.

uncrowned

I think it would be crushing to be proclaimed queen, just to find out you were only 2nd runner up. Still, I'd rather be the uncrowned, Miss California 2nd runner up, than 2nd in line for transplant.

When they call you 2nd for transplant, you get to have a hysterical meltdown, followed by a 4 hour drive. You then wait several hours to see if Mr #1 dies on the table (he didn't), and then drive the 4 hours home.

I'd rather strut in high heals down the catwalk, wearing a string bikini than be #2, again. Not a pretty visual, but I'd do it, if I thought it would help.

We're home. We're just fine.

2nd

We've been called as 2nd and are heading down as fast as we can. It looks like first has pneumonia so it is quite likely.

crying, running, run

Scott has felt awful all day, but managed to go with us to decorate graham cracker houses.

I'm just tired.

the served end

We played rook and ate pie at a friend's house. A good laugh is worth so much, these days, and it's nice to forget, for a bit.

I know that it is from my sisters, my blood sisters, that the ward thinks we need help with Christmas. I know they are trying to be kind. Their intent, probably, isn't to give me a brain scream, because I've worked, so very hard, to be not needy. It's just humbling/frustrating to be on the receiving end of a Christmas project.

The kids are getting a decent load, already, for Christmas. So maybe, this is like going to church with small children. It's torture, but it's not about you anymore. It's about teaching your children, giving them good experiences, helping them learn and grow. I just need to relax and be gracious, so my children can see the great blessings that come from serving others, even if we're the ones on the served end.

heaven knows

Scott's doing better, today.......... not quite so dark. That's nice. He's still has intermittent nausea and back spasms, but I think he's going to make it.

Lately, it's easier if my moods don't mirror Scott's. We've always been so close, there's often not a difference in how we feel. But, when it comes to depression, it's really best for everyone if there's a separation of emotion.

So, I'm working hard to stay busy with non-crisis things. I cooked pizza rolls for dinner and froze some for later, worked on packing clothes for the kids' 72 hour kits (so much for getting out of crisis mode), and took a nap. I hope Scott doesn't feel too neglected, because if he's not dying, I'm doing non-Scott things on purpose.

Scott's parents came for dinner. I'm grateful for their support. All I have to do is call and they are right here to take over, day or night.

The kids had their last Mahler symphony performance, tonight. It was so amazingly beautiful. Although I don't think I'll miss the hassle much, JA was especially sad for it to be done.

I've stopped praying for a transplant. I'm pretty sure the Lord has everything figured out, and that it will happen exactly when it is supposed to. I'm praying for patience and stamina. Heaven knows, we could use some.

Uncle Norman

I was so happy to see my great uncle Norman, today. There, in the infusion room, he told me how his bone marrow has miraculously started working again. They were able to take out the tracheotomy and feeding tube. He's on maintenance chemo, and although the cancer is at bay, it is not shrinking. It's amazing to me that a man in his late 80's would be so happy to be alive, with all that. He's worked so very hard to die at an old age.

The nurse told us about her fight with Stage 3 melanoma, while Scott's IV was running thru. Statistically, she had a 17% chance of survival, and she's five years out. So brave.

We've talked about whether we would pursue aggressive cancer treatment again, for either one of us. It would be terribly difficult to decide either way. I am not afraid to die, per se, but I am definitely afraid of leaving young children. I'm afraid of leaving Scott alone. Even then, we really are here only a short time. The blessings of having been sealed together, and the resurrection are so real, I'm more apt to work towards that, than a longer life. Don't get me wrong, I am working hard to live long and well. I just can't guarantee that I would choose to stay if presented with a choice.

It's been a tough day. The chemo makes Scott weak. He is having back spasms, and can't get comfortable. I am praying he will sleep better, tonight.

For a distraction, I worked on the food for our 72 hour kits. C. and I sorted out granola bars, jerky and hard candies into 6 piles. The kids had fun picking out of the different flavors of corn nuts and fruit snacks. I think they are itching a bit for a reason to eat "Dora the Explorer" cookies, and drink soup from a can. The living room is still a grand mess.

what my heart cannot handle

I have to remember that walking sleeveless into a steamy swamp at dusk, and spraying yourself with sugar water, is probably a better repellant than repeatedly asking a sticky, nine year old to please stop touching you. That's not what did me in, tonight, but it was priming.

I ran a little ragged: drop off C., 5th grade band concert, science fair project inservice, sister's house, high school, dress rehearsal, sister's house, dress rehearsal. That's not what did me in, either, but it certainly egged on the fatigue.

I, again, compared all this to having a baby, but remembered that there is something much worse than labor and delivery. There's breast feeding. Just thinking about breast feeding did me in.

Breast feeding is not unlike taking your most precious body parts and slamming them in the car door knowing, that every two to four hours for the next 12 months, you will be doing it again. Contemplating that there might be some lactatingish phase to liver transplant was more than my heart could handle.

There is a beautiful view of the temple up past the Manwaring center. I left rehearsal and walked the campus, grateful for some aloneness. On my way back down to the Snow, I stopped at a bathroom to fix my face and cry some more. It always takes a good cry to bring me back to the here and now. I'm only ok in the here and now.

By the way, Mahler is much more beautiful with your own angels in the chorus, and exquisite enough to merit it's own, good cry.

music posture

John August will be home any minute. He will be taking a bath and scraping the scum off his teeth in preparation for dress rehearsal tonight. The kids are in the chorus of Mahler's symphony this weekend. It's good to have something centered on them for once.

Mahler is so heavy. I just don't think I have the posture to sit thru an oratorio. I have more of a bluegrass/country/soft alternative music posture.......... kind of slouchy.

Scott is intensely fatigued with this new round of chemo. At least, he's not nauseated, and sleeps thru the night without any additional medication. Man, I'm so grateful his prognosis is good. I'm not sure we could do this if things were at all iffy.

gifts for that special someone whose brains are fried

One of the kindest gifts I have received of late, is a massage. I have had three in the last 6 months. It is definitely what I am going to give my friends when their brains are being fried on the sidewalk. Thanks Bev and VaLayne.

I talked a good while with my neighbor at the Relief Society Christmas dinner, tonight. She lost a baby to cystic fibrosis, is losing her 14 year old to cystic fibrosis, and has a 7 year old with cystic fibrosis who is asking when he's going to die. All this we are going thru looks like Disneyland compared to what they are facing, and here, she took the time to lift and strengthen me. She's a rock.

It was a relief to talk with someone who really knows how hard this is. She knows about being stuck and waiting with a crisis over your head, while the rest of the world spins and rushes on the outside. She just knows, and she taught me that empathy and compassion can be incredibly powerful gifts. I can only hope to give them as gracefully as she does.

Anyway, I'm having trouble with my internet connection. It might be because the cat barfed on that little box in the garage. I don't really want to go reset it, because I want to remain ignorant as long as possible to the fact that someone spilled a bunch of birdseed by the back door while I was gone at the party. It might go away, if I just ignore it long enough.

I had some really boring housework planned for the day, but I thought it might be more fun to drag Scott to our local family doctor for labs and then haul him in for IV fluids at our oncologist's office. He did say that he felt better after the IV fluids, so at least, that was worth it. I guess it was worth knowing his liver enzymes are within an acceptable range of abnormal, and he doesn't have an infection.

As usual, my motives are warped

Two years ago, just a couple of weeks after his eighth birthday, the neighbor boy was hit and killed at the top of our street. He was one of my primary children, and my daughter's classmate. His organs were donated, and three lives were saved by his family's humble generosity.

I talked with Weston's mother, today. Being on opposite ends of the spectrum, we teared up as we discussed the giving and receiving of organ transplant. I am glad that we talked. It was healing. Just knowing, that a family like theirs is going to save a family like mine, is so sobering, and my heart aches for our donor family.

So, in sacrament meeting today, people might have thought I was wracked with torrential tears and snorting because I had felt the spirit, but no. The little boy in front of us had a decapitated spiderman toy, and was repeatedly shoving it's smooth, stubby neck as far up his nose as it could possibly go.

A good, cleansing laugh is worth so much these days. Perhaps my motives are a little warped, but I really enjoy going to church.

A new aspect of purgatory

There are several aspects of purgatory that I have never really considered until now: itching, and sleep deprivation.

Scott isn't itching as bad now, compared to a couple of nights ago, but it's far from pleasant. He can't sleep, his eyes are yellow, and he feels terrible. Bedtime is a nightmare and he's wide awake.

I could drag his hiney the 4 hours to SLC, but I don't think there is anything to be done. I feel like they will say, "Looks like his liver enzymes are up. Waiting for a liver really stinks. Deal with it."

Anyway, the kids did great at their concert, this afternoon. They have one more performance, this evening, and two next weekend. M. was so excited that they had received standing ovations, until N. pointed out that the show was over and the people had to stand up to leave anyway. I'm very proud of them for sticking it out, inspite of all this craziness. They're such great kids.