lamaze

Lamaze breathing is not really for labor......... Oh no, no, no, no.

They teach you lamaze BEFORE you have that child because they know that at some point you are going to need to employ swift, shallow breathing in order to keep from ending up featured on the 10:00 news after you have discovered late, sorely embattled homework still in her binder, done, but not turned in.

I think my brains may have leaked out of my ears, tonight, but everyone went to bed feeling loved. So, hey, lamaze works for homework.

Waiting for transplant is a lot like having a baby. The anticipation is terrible. So hopeful and yet it could be months and months, and more false alarms before it finally comes.

Right before you go into labor, you nest; cleaning, packing, getting everything ready, pulling out closets and moving furniture. I never was very graceful at waiting and would do deliberate nesting activities in hopes that it would encourage things along.

I am nesting now in hopes it will deliver a liver. Ok, so I didn't nest very far, but the big room is relatively clean, and I have intentions of mopping the coolaide coated floor. The bathrooms are an obvious target. I am craving a big steam sprayer, like the ones at car washes to blast away the accumulated grime.

I'm wired and would love nothing more than to drive Scott to Salt Lake right now. I never have been graceful at waiting.

I guess we could go walk Walmart. Maybe, we should go for a drive on the back roads...........

Special Needs

So last week, while passing the library at church, I noticed that my children were teasing the substitute librarian. He's a good natured man so I said, "Be nice to Brother Cromwell. He's from Ririe. He has special needs." I forgot all about it until at church, today, he asked me if he was still "special needs". I am also from an Idaho podunk so I told him, yes, but that I was also a special needs person coming from West Jefferson.

It started me thinking about how special needs we all are. There was this warm, gushy acknowledgment that we are all pathetic people, but that the Lord knows each one of us and tends carefully to our needs. It was a feeling that the Lord wants us. He wants me.

I felt happy, but even more, I felt content...........well, for about a minute.

Not to seem superstitious, or ungrateful, or anything. But I seem to get these feelings right before my world grinds to a halt. It has never failed. Everything gets stripped down to the bare bones of breathing and praying within a short time of feeling God's love.

They have become a warning, a hold on to your britches. I felt it on the way home from the hospital in April, right before they told us Scott had cancer. I wondered, then, what on earth could be coming that would warrant being strengthened to such a degree.

It came, and I have been so grateful for that affirmation that God lives and loves me. It pulls away so much doubt, so much fear. It's a, "You're where you need to be. You'll be fine. Hang in there.", to pull out when I really need it.

Still, that does not prevent the drastic series of intestinal distress that follows......not that you really wanted to know about that.

Anyway, we are having a nice Sunday. The kids have decided to bury each other in the leaves. They are not fighting, so I am endorsing it as a worthy sabbath activity.

Scott does not have to start chemo until Friday and is feeling quite well in his Sunday napping mode.

I am left to take a tums and a few pictures of the kids. What is there to do but enjoy? Pray and enjoy.

Almost third hand

The #1 guy took the liver but it was touch and go, for a while..... a long while.

The liver arrived in SLC at 10:30pm but the #1 man was really unstable. They didn't know if he would live to the operating room. If he didn't, they would let us know.

We prayed for the man, and for the Lord's will.

Rollercoasters have nothing to offer compared to being the back up man for a transplant. It is a huge emotional pot that takes you from hoping the #1 man has a cold to praying he lives, but if he doesn't that the liver will be fine. Excitement, frustration, grief, hope, disappointment, relief, exhaustion, anxiety. Pretty much everything but sleep.

I called, again, at 1:30am. They were in surgery. The nurse said there was still a chance he might die on the table. If he did, they would just take out the liver and use it on Scott. Apparently, it's been known to happen and, again, they would let us know.

We just prayed for the man. It's one thing to win out for a liver because the other man has a cold. To become the #1 man because the other man died, is another. Also, it seems rather unlucky to get a liver third hand.

The nurse called at 5:30am. The man lived, thank you.

We will wait for another liver, but it is incredibly destablizing to be in a condition of constant waiting. I am more than a little nuts right now.

This morning, we have to meet with our 4th oncologist to start chemo, something we were most hopeful last night of skipping. I have, successfully, delayed the chemo for more than a month. Alas, it will have to be dealt with. Hopefully, the anticipation is worse than the actual chemo. The dread, itself, has been crushing. Heaven help us if it equals or surpasses expectations.

As if time could not pass any slower

On our way down this afternoon, we recieved a phone call from the University Hospital. There is a liver coming from Phoenix and Scott is 2nd pick on the list. They like to have several people lined up in case the first person has a cold or in some way does not qualify for the liver. We should know by 10pm if the liver is for Scott.

It's 7:27.........7:28...................................................................7:29.............................................

What's a girl to do?

A girl is to eat her bag of deli chicken, wash it down with whatever is in Jan's fridge and top it off with a bag of Doritos. That's what a girl is to do.

7:31............7:32...............7:33.............7:34.............7:35..........

.....pray.....munch.......pray.........raid the fridge.......

7:36..............

Twelve good hours

So, after a few dark and crabby days, I'm back. M. asked what I am going to dress up as on Halloween. That's a no brainer. I replied, "A witch." I have been a witch. Sometimes, I just get tired of it all.

Fortunately, the Lord seems to keep a pretty good stash of attitude adjustment material. When I feel ungrateful, He pulls it out and hits me across the back of my head. It's good to be reminded of how blessed we are, and that things could be lots, lots worse.

Today, we are doing really well. For months, Scott has asked me several times a day, "I'll feel good again, right?" Finally, today, Scott felt good all day long. He crashed at 7 pm, but 12 good hours is practically a miracle. It's been hour-to-hour surviving for so long, we almost don't know what to do with ourselves.

The primary program was today. The kids sang well and M. played her flute. I didn't see any of my kids eat their boogers so, all in all, it went great.

Sleep, baby, sleep...

We are in SLC an extra night. Scott's drain was replaced late this afternoon and since it is storming we chose to start back in the morning. We don't mind too much because it is rather pleasant here at Jan and Bill's house. They feed us and make us laugh.

Things To Look Forward To

Halloween: The girls are going as parrots(they look like mexican pinatas). JA is going as a ghost.

Pinewood Derby: N. and Scott are making a car together.

A really clean house that stays clean: A girl can dream, can't she?

Remodeling the front room: There's this itch to rip out the ugly carpet. I am working up to tiling to the front door and putting in a hard wood floor. But, first I have to fix the window casing and repaint the room.

Blessings of the Day

I browsed the IKEA for a whole hour this morning and only spent $25.

Since our new oncologist is not available until next Friday, we will just have to postpone chemotherapy for another week. Darn. Scott is just heartbroken.

Scott has not vomited because of the general anesthesia he had earlier (miracle).

I do not have energy to remodel the front room. I will not have energy to even start for quite some time. (This is a blessing to Scott, because my remodelings drive him nuts.)

Scott is doing fine, for now. He had some pain from the procedure, but appears to be sleeping solid, tonight.

Sleep, baby, sleep.....

Miracles of the Day

We met our 3rd oncologist, Dr Dickson, today. I need someone close to help manage side effects of the chemotherapy. Hopefully, we won't need him, but if I don't anticipate trouble I know I will regret it.

We will meet our 4th oncologist later this week. We did not like our 1st oncologist and opted to use another. Our 2nd has fallen ill and will not be back for several months, if at all. So, we will meet a new dr and go thru the same old drill; where ya from, why ya here, where ya hurtin, are ya poopin, insurance card, when does your visa expire.............

Anyway, there have been many blessings and several small miracles today.

N. woke up happy today.

We held family home evening and everyone participated. No one got hurt.

Oh! Can't forget. N. got brackets placed for headgear at the orthodontist. It was all for an enormous amount, but I swallowed my breakfast back down and paid it. The assistant came back and said they forgot to subtract the insurance's portion and that the amount is only half as much. (Laaaaaa! Enter background music of angelic choir)

The water softener is working. I installed it in April and haven't been able to pray it into functioning properly until now. Consequently, we can now use our dishwasher. Joy! ...or rather, Cascade!

There's loads more, but I don't think you are interested in knowing things like what a miracle it is to get the kids in bed by 8:30. Besides, I have to save something for next time.

I always feel better after you leave

I am so grateful for our kind family, friends and neighbors who have helped us with diversions over the last week.

Scott's sisters came up from Utah for a few days with their children. All the cousins stayed at Scott's mom's house to play and share snotty noses.

Yesterday morning, our neighbor invited us all for lunch and let us ride their four-wheelers. It was a huge thrill for the kids.

Last night, we raided my sister's house. We brought rootbeer floats because people are always happier to see you if you bring food.

We had dinner tonight with some good friends at their house. It was great fun and good food. I just got off the phone with her and thanked her for having us. She said, "I always feel better after you leave." It sounded as though she invited us so that she would feel worse with us there and that her life would feel better by comparison after we left. It was very funny and we laughed.

I hope we have not been an imposition on anyone. The diversions are invaluable as it has been a huge drag at our house. I am so grateful to get out and escape for a little while. Thank you.

Scott seems to be doing a little better each day. He is not in much pain but does not feel good and has no energy. I wonder about him being dehydrated. It has been such a problem all summer.

Anyway, we are not excited to go to Salt Lake. We have an appointment on Wednesday at the transplant clinic. The pokings and proddings get so old.

Driving also gets old. I've used up more than a few angels driving thru Salt Lake, and I always thank the Lord for safe passage thru Utah.

salad is not a comfort food

I've discovered that lettuce does not make a good comfort food. No matter what I smother it in, I don't think it is possible for salad to "hit the spot" right now.

Even deli chicken has lost it's appeal. Something about the skin under my arms turning chicken fat globby just ruins it for me.

Out of desperation for a decent comfort food, I am pulling Dr Peppers from my deepest stash. It is my last resort drug when I am "overwhelmed mother" crazy and cannot tolerate any and all noises. In my darkest hours, Scott will, ever so cautiously, side slide a Dr Pepper my way. It is his way of saying he cares but is rightfully afraid of having his face ripped off.

Anyway, a Snickers candy bar washed down with Dr Pepper works wonders for me right now.

Scott is surviving. Unfortunately, he seems to have built up a tolerance to pain medication. He is not in severe pain. It's just a moderate to low grade, constant pain. It drives him nuts. The drs are not going to give him the really heavy duty, addictive pain meds for moderate pain. It's difficult to tough out chronic pain.

I am relieved that Scott was able to work for a few hours today on his computer. The man needs direction and does so much better if he can get something done. Compared to the last week...... or month...... or summer, he had a pretty good day.

It's 7:30 pm. I am in bed for the night.

I thought it better to drool in my bedroom than in front of the children.

I kind of want my old life back.

I crave being ineffective because I am lazy.

Instead, I am rendered useless because I am fried.




I miss it.



.

whew

So, Scott's art show opening was tonight at the Spori gallery. It showcased his book Un-Brella and all of his unbooks. It's such a beautiful show. Lots of friends and family came. The gallery served milk and cookies because it is a children's book and children are supposed to have milk and cookies with their books. It was great. (Special thanks to Brenda Benedict and Karen Anderson. Thank You, Thank You.)

The art department faculty showed up wearing bowties in Scott's honor. The print making teacher made special bowties with one of Scott's patterns for faculty that didn't own a bowtie. It was really endearing. I am so grateful for their show of support and love. It was just what Scott needed right now.

Really, I was so glad to get Scott there at all. Even if he proved to be just a warm body propped in the corner, it was better than standing there by myself. As it turned out, I didn't even have to play ventriliquist. He talked with everybody and had a nice time.

Whew.

as far as hells go

I've always considered hell to be a state of mind (not the swearing Hell, I mean actual hell), and that it was all relative to what kind of hell you had had previously, and that each and every person has their own personal perception of what that hell is. I've learned that hell is redefined by experience and, as the stakes get higher with children and such, that the potential depth for hell only increases with time.

I am only thinking about hell because it is amazing to me that the depression that totally incapacitated me 10 years ago seems like nothing now compared to the pressure I have felt off and on this summer in dealing with Scott's pain and his depression, and keeping the family intact. It is an exquisite quality of hell I have never felt before, let alone for such an extended amount of time.

That's not entirely true, though. If I really think of it, there were those years, with 3 children ages 3 and under, that I was totally insane. That mostly passed when they all slept thru the night and were potty trained. It was a pretty good hell, though, as far as hells go, and exquisite in it's own way. At least I learned a lot.

I am learning now.

Lessons that had been previously sketched on my heart are being carved deeper this time. I knew about the atonement and grace. I knew that the Lord loved me and that if I prayed He would answer my prayers.

But now, I know more of what grace is capable of. I know that the very heavens will move on my behalf as a result of my prayers, that the Lord will carry everything that I give to Him (but you have to give it to Him). I can see how all things are actually possible and possible to endure, and that even the most hellish of circumstances are really just moments in time to be learned from.

Unfortunately, I also know that with time, I will probably forget everything I have ever learned from this experience and that the Lord will see it necessary to teach me these things, yet again.

At that time, I will probably not have a blog to vent to and torture everyone with what is going in our lives, which will probably spare you some unnecessary, vicarious hell. Lucky you.

awgh

We are headed back to Utah tomorrow. Scott has a follow up appointment on Wednesday. He starts back on chemo some time this next week.

Shriners hospital called me for a follow up appointment for surgery I had 35 years ago. It's part of a study they are doing. They were so kind to me I would do just about anything they asked......Ok, and since they are paying for food, milage and hotel it couldn't hurt. The appointment is Thursday.

Scott is struggling. He just doesn't feel good. He hasn't felt good for about 5 months. He would truly rather shove his head into pig mire than play this game anymore.

Cancer really stinks. Cancer treatment.............. awgh, never mind.