Scanned And Waiting

Krista continued to get her IV antibiotic infused here at home. She's half way through the 10-day course. Today she felt better than usual because of the anti-nausea she started taking regularly. She's using generic Odanestron ODT which disolves on the tongue, but the particular variety of this generic has a horrible taste to it. We have a refill coming with the name-brand Zofran ODT, but it won't be available until tomorrow morning.

The urology scan happened this afternoon. Krista was very nervous about how painful it might be, but said afterward that it was roughly equivalent to getting a pap smear. We both got to watch the procedure on a monitor, as the camera went into bladder. It's amazing how clear her bladder was -- very smooth with some red splotches that were clearly not normal. The most likely explanation for this is that it is effects of the chemo, but there is a small possibility that it could be a particular type of bladder cancer. I have forgotten the name of that type of bladder cancer, but that variety emits cells into the urine. The doctor took a sample of the urine near the blemish for analysis. This is just a precaution, as it would be very rare, though not unheard of, for cancer to develop. If the test comes back negative, then they'll just wait for the blemishes to heal and have her check back in a couple of months to do another scan.

The Jesusita fire has spread considerably, almost spanning the areas unburned by the Gap and Tea fires last year. Highway 154 is closed between the 101 and Painted Canyon Road at the top of the pass. We can see flames on the mountain from the window in our living room. Fortunately, we're still not in the danger area, but we are starting to smell smoke when wind blows our way. It's another really hot night, 80 degrees at 10:00 pm. Catherine Short brought us a great looking turkey dinner, though with the heat we didn't want to use the oven. We'll put it in the freezer to make when it's cooler. Thanks Catherine!

Your righteousness reaches to the skies, O God,
You who have done great things.
Who, O God, is like You?
Though You have made me see troubles, many and bitter,
You will restore my life again;
from the depths of the earth
You will again bring me up.
You will increase my honor
and comfort me once again.
(Psalm 71:19-21)

IVIG No More

It's hard to believe, but Krista's last IVIG dose was today. That schedule has been going for so long, it feels strangely open. We are only going to UCLA every other week, now, and on the off weeks we're going to need to go to get labwork done at the local lab.

It's not that there's no more home health right now, though. Krista is still getting IV antibiotics twice a day, morning and evening, until at least Monday evening. The antibiotic dose is very high, and it is regularly causing Krista to develop nausea around 4 pm. I called UCLA about this, and they said that it is a side-effect of the antibiotic. She needs to start taking an anti-nausea regularly instead of as its needed. It's very important to keep fluids down, and have small meals regularly, so she doesn't end up in the ER again.

The Jesusita fire is going crazy. It was 84 degrees just before 9 pm, winds blowing strong, constantly changing direction. From the main street near our house I could clearly see the enormous flames shooting up the mountainside (in full daylight even), and the smoke is incredibly thick. We are not in a danger area, but many people including two in my group at work are in the mandatory evacuation zone. May God have mercy on those who are affected by this terror.

Therefore let everyone who is godly pray to you
while you may be found;
surely when the mighty waters rise,
they will not reach him.
You are my hiding place;
you will protect me from trouble
and surround me with songs of deliverance.
(Psalm 32:6-7)

ER Light

Krista was having a real hard time keeping anything down last night. She didn't have a fever, and there was no blood in what was coming out, so I knew that there was no need to call UCLA about her problem. She was clearly dehydrated and, though water didn't sit well, ice chips were doing OK. I thought that with the ice chips she might pull through.

After I put her to bed, I started getting her medicines ready for the next day as usual. but then I noticed that she hadn't taken any of her dinner or bedtime medicines. Then I remembered that she was having increased blood pressure earlier in the day and that she was going to wait until dinner to take her blood pressure medicine to take care of it. But it never happened, and by the time I recognized it, her blood pressure was way to high -- and she wouldn't be able to keep down a pill! Plus, she was severely dehydrated and needed fluids.

So we packed up and got out of the house around 1:30 am, and headed off to our local emergency room. Fortunately, it was a slow night for them, and we got right in. I've never had that happen before! They hooked her up with saline right away while they spent the next few hours running blood tests, and due to a hidden fever, they ran a test for influenza which turned up negative and more blood cultures too. In the end, they really didn't come up with anything conclusive, so they admitted her to 6 Central for the night for observation and to continue giving her fluids. She was feeling better with the extra hydration so they let her go home in the afternoon...shortest stay ever.

By that time, the newly stoked Jesusita fire in the mountains behind Santa Barbara was spewing smoke all over the city. It's been really windy, dry, and hot -- all of which make fires much more likely. Terry McElwee is Division Chief of the Montecito Fire Department. His wife, Mia, was scheduled to bring us a meal tonight. I was expecting that might not happen with the fire going on, but she came through -- with Mexican Chicken Tortilla Soup for Cinco de Mayo. Thank you Mia, and may God give Terry insight and help all those firefighters get the fire out quickly and safely!

But now, this is what the LORD says—
He who created you, O Jacob,
He who formed you, O Israel:
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
(Isaiah 43:1-2)

Rapid Backpedaling

It's strange to get start the day off with a nurse visit at home, but we're getting a little used to it. I have to take the antibiotic bag out of the refrigerator at 6 am, and then I can go back to sleep for a little. Krista seemed to sleep through the dose this morning, though she was up for at least some of it. The saline flush seems to cause her a lot of pain that she never had when she had the Groshong line in.

Krista slept in while I cleaned up the house after the kids went to Artios. Krista woke up and rested on the couch while I went to get her prescriptions refilled. She seemed to be doing fine, so I got lunch ready for her so I could step out to work for a while. I called her regularly to make sure she was doing OK, and Alyssa came over around 3 pm to hang out and let the kids play together. That's why I was surprised around 5:30 pm to hear that she wasn't feeling good, and a short time later to hear that she had thrown up. I got home as quick as I could -- and Marilyn had shown up early to get the evening antibiotic going. Krista eventually got some sleep while the antibiotic went in. Her stomach stayed upset into the evening, but at least she got some rest. If she starts up again, I'll need to take her in to the emergency room -- but for now that doesn't look necessary.

[Job speaking] "For sighing comes to me instead of food;
my groans pour out like water.
(Job 3:24)

Treasure Hunt

Krista continued to have generalized pain today and there's a growing pain at her IV site. So far, there's no sign of any problems with the IV; it's probably just on a sensitive area. With all the neuropathy Krista has, just about everything is a sensitive area. Still, she is doing very well overall, and managed to get in and out of the bath easily all by herself.

We spent most of day resting (a rare and much needed event for me), and we all watched Saving Sarah Cain together. It's neat how the boys enjoy watching family-friendly dramas, though this one may have been a bit long and serious for Trevor's attention span. But both boys loved how the Amish children showed their appreciation for a meal by burping afterward. I don't know if that's an accurate depiction, but it did get a good laugh.

Friday night, when Trevor had his sleep-over, he got to have a successful experience with geocaching, a world-wide high-tech treasure hunt hobby in which enthusiasts hide a box containing a log page and some nicknacks, and then post the global coordinates of the treasure for other enthusiasts to find it. I wanted to see what it was like, so I signed up with geocaching.com to see if there were any treasures hidden near our house. One of the first ones listed was just a few blocks from our house, so Adam, Trevor, our neighbor Sean, and I walked over with my portable GPS to see if we could find it. No such luck -- but it was fun looking. The boys wanted to try again, so we went back home to see if there was another nearby. There was -- just a little further than the first one -- and this time Krista wanted to join in. She walked to the end of the block, and then we wheeled her the rest of the way. We didn't find it, but we did find a bag of broken toys and trash stuck in a bush nearby which I threw away. I found out later that this is a practice that geocachers encourage, calling it CITO (Cache In Trash Out). I think that's neat -- turning a frivolous hobby into something that actually helps the community. It's going to take some more practice to be able to actually find one of these treasures, though.

[The LORD speaking] "You will seek Me and find Me when you seek Me with all your heart."
(Jeremiah 29:13)

Surprise

My predictions are getting better: today was a rough day for Krista. There was lots of aching, and she needed to rest most of the day. It's not surprising given how much activity she had yesterday. Hopefully she'll feel better in a day or two.

Krista started getting IV antibiotics today. We had quite a surprise when we found out that the administering nurse was our friend Marilyn from Buellton. We haven't seen her since we moved three years ago. Krista's cough was a bit "scratchy" in her upper lungs for some reason today. Marilyn and the nurse coordinator were concerned about pneumonia (even though antibiotics should cover that), and recommended some breathing exercises in addition to her twice a day dose of antibiotics. It looks like we'll be seeing a lot more of Marilyn over the next ten days.

We had chatted with Jennelle previously on email, but today we actually got to meet her when she brought a taco dinner over for us. Tom bought some more baseboard material to finish up what he had been working on. This afternoon, I took the kids to see the Artios production of The Princess And The Pea. They both enjoy the regular Artios drama class so much they want to join their drama club next year. It's great to have their interest peaked!

But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.
O my Strength, I sing praise to you;
you, O God, are my fortress, my loving God.
(Psalm 59:16-17)

Active Day

Krista took a break from walking exercise yesterday so today she could show off her walking ability for the doctor at UCLA today. I wheeled her into the waiting room, but after that she was up on her own. She did great with it, too.

The routine at the visit was a little different than usual because she just had her labs done yesterday. It was nice not to have to give a sample today; without the line, samples require a poke, but there was no poking today.

The doctor said that Krista was doing really well. He cut her medrol dose in half again and said that she only need take that for one week more; after that she can stop it altogether. He was concerned about the oral antibiotic that she got from the hospital. Apparently, even though the bacteria is reactive to the antibiotic, the oral antibiotics are not capable of saturating the body with a sufficient amount to kill the infection in hard-to-get-to areas like valves and bone. They often see people on orals get hidden infections that show up months later and get so rooted that it stays with them their entire lives. He ordered daily IV antibiotics for Krista, instead. He didn't want to put a portacath in, since it is so similar to the line that got infected. She's going to get a new short-term line every three days for the next couple of weeks. That should be sufficient for getting the daily hour-long IV antibiotic dose. The good thing is that all this is going to be done from home -- starting tomorrow.

As we reflected on the upcoming 100-day milestone, the doctor beamed that Krista is going to be one of the "poster children" of the stem-cell transplant realm. Krista joked with him that he probably meant what not to do with a transplant. But he was serious and reminded her that she almost died at one point with a liver that was "mush" -- and now she's doing great.

While we were at UCLA, Tom got to take the boys to a taiko drum performance at the Granada Theater with a bunch of fellow homeschoolers. Afterward, Tom finished up nailing in the baseboards he cut up yesterday (and it looks great now), while the boys went to the Marton's home to play. In the evening, Adam was invited to a dinner-and-game gathering at the Suttons house, playing a role playing game that Randy created. Trevor wasn't old enough to play, but the Marton's invited him to have a sleep-over at their house. So, we had a kid-free evening and Krista used the little energy she had left over to help me cook up two recipes she had her eye on for a while: Salmon Croquets and Creamy Farfalle with Mushrooms and Asparagus. She made the Croquets! I think she's pretty wiped out now, but she was so happy to be able to do stuff -- even if it's just for a day.

The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
Then I called on the name of the LORD:
"O LORD, save me!"
The LORD is gracious and righteous;
our God is full of compassion.
The LORD protects the simplehearted;
when I was in great need, He saved me.
Be at rest once more, O my soul,
for the LORD has been good to you.
For You, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
that I may walk before the LORD
in the land of the living.
(Psalm 116:3-9)