Day 8: Crazy Day

Today was the craziest day. It started last night with Krista not sleeping well partially due to another headache. They managed the pain better, but she got pretty groggy and may have said some things incoherently that were misinterpreted. Krista's goal has been consistent with the pain management specialist's goal -- to keep the pain under control before it gets out of control. Somehow the nurses interpreted things she said while waking up and wanting to go back to sleep as that she just wanted to be knocked out with drugs. Not! We cleared that all up this afternoon. The pain specialist came by again today and put her on a PCA (Patient-Controlled Analgesia) to cut out the middleman. That's the machine where she pushes a button and gets a small dose of pain meds. So far it's working well for the pain management.

Back to the craziness... This morning when I came back from my morning meetings, Krista was in tears. She was having incredible pain in her sternum area, radiating outwards. She described it like a horrible sunburn, both inside and out. The nurses have to respond to things like this to find out first if it is a heart attack. They took blood, x-rays, and EKG readings and all of them were conclusive that it was not a heart attack. Phew! But what could cause such a strange symptom? It could have been either of two causes: mucusitis or constipation. She was having problems with the dry mouth yesterday, so it could have been mucusitis, but she also hadn't defecated for three days. After she discovered that it got worse when standing, and that she felt a little better after vomiting everyone was in agreement that is wasn't mucusitis.

Normally they would treat constipation with all sorts of laxitives, stool softeners, etc. But the particular chemo that Krista received Saturday is notorious for causing diarrhea -- the most common symptom on the floor according to her nurse today. So the trick is to give her just enough to get her going again, but not too much to go to the other extreme. There was some progress made in the afternoon, so hopefully this will resolve itself soon.

Tomorrow is transplant day. Today, a kind young German man gave up some of his stem cells, which were packed up and shipped off to the United States overnight. The best they can tell me is that the donor's shipment is expected to arrive around 4 p.m tomorrow (Wednesday). After that it has to be counted to extract the right number of cells for her body weight and a few other things. They don't expect to do the actual transplant until the evening. It all feels a bit unreal.

Oh, another crazy thing happened too. I had to do some laundry today, since I only have 3-4 days worth of clothes with me.  They have a great facility for caretakers here, complete with showers, kitchen, tables, bookshelves full of books and movies, and washers and driers. I put my wash on and sat down to eat dinner and a woman came in and said, "Is your last name English?" I was shocked because I didn't recognize her. She turns out to be from Santa Barbara, and had recognized me from my picture in the newspaper from one of our fundraisers. She has been down here over a month dealing with her husband's relapse of MDS after a transplant.  (MDS is another blood cancer; the same one that Robyn Roberts from ABC-TV got a stem cell transplant for.)  They are trying to get it into remission with chemo.  Please pray for Jeff and Kathy as they continue to travel this difficult road.  I'll end with the psalm that Jews used to recite as they traveled the road to Jerusalem for Passover to remind us to look to God to keep us all safe on our journeys.

I lift up my eyes to the mountains—
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The Lord watches over you—
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The Lord will keep you from all harm—
he will watch over your life;
the Lord will watch over your coming and going
both now and forevermore.
(Psalm 121)

Day 7: Nothing About This Is Fun

Since it was Monday, the hospital got back up to running at its normal active level. That means lots of visits from doctors.

The physical therapist visited and went through a series of exercises. They walked a couple of laps and did chair exercises. The goal is to keep her moving now while she can. From here out, she's going to feel progressively worse as her blood counts drop, and when she feels bad she's not going to want to move around much.

The occupational therapist visited also and went through some exercises she can do in bed.

Her pain specialist came by to see how things were going. There was a bit of a miscommunication with the directions given to the nurses, so they have been a bit reluctant to give her what she needs to keep on top of the pain. The doctor cleared that up and the pain meds have been much more effective tonight.

Her oncologist stopped by also. Krista has swollen glands in her neck that he wanted to look at. He suspected that she had blocked salivary glands since it was in combination with her having difficulty swallowing food because of a dry mouth. He recommended sucking on a lemon to stimulate the salivary glands. She did this at dinner, but didn't feel any difference. 

Krista's kidney labs are still a bit off, so they continue to put extra water into her through the IV. This is making her use the restroom quite frequently, which is actually a good thing. She's feeling better today than yesterday, but was annoyed enough with it all that she said, "Nothing about this is fun," pointing at her IV pole she always has attached.

Thanks to Terry for bringing a meal to the kids and grandparents tonight. It's a relief to know that things are being taken care of back home while I help Krista through all this. We keep trusting that God's going to provide a way through it all.

No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it. (1 Corinthians 10:13)

Day 6: Pressure Changes

I forgot to mention last night that Krista was having unusually low blood pressure. I didn't sleep well because I wanted to make sure she didn't fall when she got up to use the restroom. She didn't have any problems with dizziness fortunately, and today her pressure stabilized. The endocrinologist has been making daily visits, and today he seemed confused about the blood pressure. He had reduced her hydrocortizone yesterday because he says that her adrenal glands are producing again. The amount that he reduced yesterday was very minimal and should not have had any effect. He ordered it to go back up today, just to be safe. I don't know if it had anything to do with it, but her blood pressure seems to be doing better. Very strange.

Most of the day Krista slept. The nurses started her on some new medicines that are anti-rejection drugs. One of the side effects is stomach pain, which they treat with pain killers, which require anti-nausea drugs. All that makes one quite drowsy.  

I finally got the kids ride schedule worked out for this week.  It was a little complicated because of conflicts and last minute changes like a soccer game getting cancelled. We are so thankful that we have enough help to fill all the schedule gaps.  Thanks Terry, Nancy, Nora, and Bonnie! It's great to have the freedom to stay here with Krista since she's been having complications.  It's not that long until the transplant, which is coming up Wednesday.  

Hear my cry, O God;
listen to my prayer.From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.
For you have been my refuge,
a strong tower against the foe.
(Psalm 61:1-3) 

Day 5: Go! Fight! Win!

Saturday was going to be a big day, and I was hoping to wake up early enough to miss traffic and make it to the hospital with enough time to decorate before the last dose of chemo. My cell phone has an alarm but I didn't realize that it was in silent mode when I went to bed last night. The alarm went off, but I didn't hear it and woke up later than I wanted. I suppose that I needed the rest. Fortunately, the traffic was pretty good (only one 2-mile stretch of stop-and-go).

The boys and I spray-painted some pine cones last night to make them compatible with the hospital environment. The plan was to hang them between a drum-cymbol stand and a IV drip with fishing wire. Plus, they had picked out some football-themed party supplies to decorate the room. I brought all that stuff up to the room, but quickly had to remove the pine cones. The paint had an odor because it was too fresh. You can see the rest of the decorations in the pictures posted here. It's not much, but adds a little fun to an otherwise unpleasant environment.

The last dose was a bit late, so I was done decorating with plenty of time to spare. I went downstairs to grab a sandwich and got a text from Krista that they started the premeds already. 

The chemo only took about 20 minutes to go in, but Krista was required to ice her mouth for a full hour to prevent mouth sores. She was diligent to chew ice the whole time. It doesn't seem like much, but if you can imagine the "brain freeze" you get from drinking a smoothie you can appreciate the feat a little bit better. Her mouth was frozen most of the time, yet she kept going. At one point, she encouraged herself looking at the decorations, saying "Go! Fight! Win!" The nurse helped her through the tedium the last 10 minutes by giving her a Popsicle they found in their refrigerator. She had blue lips from the food dye in the Popsicle, but no mouth sores.

She napped a bit in the afternoon, and needed pain and anti-nausea meds at various times. But for a window she felt good enough to get in a few games of backgammon with me.

So far it's looking pretty good, even though it doesn't feel so good for her. Blood counts are on the low side but stable. They will be dropping before the transplant since the chemo is still working in her body even though no new chemo is being introduced.

It was a good battle today, and we thank the Lord for the training he's put us through that has helped us to endure it. What might he be training you for? Go! Fight! Win!

Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air. No, I strike a blow to my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.
(1 Corinthians 9:24-27)

Day 4: Moving On Up

Krista got to move up to the 6th floor today. The new room isn't that different than the old one. Roughly the same size, roughly the same view. No migraines today, and her kidney function is getting better. Thank you Jesus!

I'm heading down to City of Hope early in the morning. Now that she's in the new room I can put up the decorations the kids and I picked out for her: some football themed party supplies and shellacked pine cones we brought back from Big Bear. Just a few things to bring color and some of the outside world into her room.

The last dose of chemo will start tomorrow around 11 am. The medicine they use for that dose is different than the others -- this one will be much stronger. The nurses have been prepping Krista for an unpleasant experience. The dose will take about 1/2 hour, but they say that she will have to suck on ice chips for a full hour. This medicine causes swelling in the mouth capillaries and the ice chips help counter that effect. But it's not going to be easy. That's another reason for me to go down. Please pray that it all goes well.

This new kind of chemo is going to do the job of killing off the bone marrow in preparation for the transplant on Wednesday. There's not going to be any radiation this time, because the oncologist believes it isn't fully necessary or safe for Krista after all she's been through.

Thanks to Regina for bringing dinner tonight. And thanks to everyone who helped with rides for the kids this week. I'm working on rides for next week, and so far it's looking good. Glenn and Jannelle are staying with the kids at home again this week. That's great because it allows me to be more flexible in case I need to extend my stay with Krista. We'll see how it goes and how long I may be needed down there. It's interesting that Jesus answered the disciple's fears with a discussion of rooms in heaven. I'm going to settle my heart today with this thought:

[Jesus speaking] "Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you?"(John 14:1-2)

Day 3: Start the rollercoaster

The roller coaster has started up again.  Krista told me this morning that the blood tests this morning have shown some inbalance in kidney function.  The doctors suspect that this is because of the antiviral and antibiotics she is taking, so they are changing those and possibly even reducing the amount of chemo she's getting.  On top of that she got another migraine.  Fortunately, they were able to alleviate the migraine by the end of the day.  She sounded better when I talked with her tonight, though a bit tired.  Still, she has to stay up til 10:30 when they'll start the fourth dose of chemo.  Hopefully tomorrow her blood tests will show some improvement.

Krista also said that they were going to change her room up to the 6th floor today, but something happened and they changed their minds.  I'm planning on going back down Saturday, without the boys, and hoping that she'll be in the new room by then so I can start to decorate it.  The rooms are very bland! The one bright point in the room right now is a beautiful quilt that one of the moms from our Boy Scout troop made for Krista on behalf of Troop 1.  Thanks so much Mary!

Trevor stayed home from school today due to a sore throat and a stuffy nose.  He's doing better now, with just a residual stuffy nose.  He thinks he'll be able to go to school tomorrow.

I love you, Lord, my strength.
The Lord is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield and the horn of my salvation, my stronghold.
(Psalm 18:1-2)

Day 2: Feeling Better

Today was a better day for Krista. Her migraine went away and they managed to get the grogginess under control better. She was feeling good enough today that I actually did go home. I wouldn't do this normally, but the care she's getting has been excellent and that makes it easier to trust her into their hands.

Krista tells me that it has been a very nice experience being at the City of Hope. The staff seem to really care, and treat her like a person rather than a number. Today, without any prompting, they sent first a physical therapist and then an occupational therapist to determine her physical capabilities and provide exercises she can do while getting treatment. She has seen physical therapists previously that weren't that helpful, but this one was excellent -- asking the right questions and offering the right kind of help. She also got to meet with the pain management specialist who has been helpful in identifying ways of helping her with the unusual pains she has been experiencing. The theory is that her body has saturated the pain threshold so that it doesn't take much to set her into strange whole-body pains. The pain management specialist has her taking a medicine that should bring that threshold down. So far it seems to be helping, though they're still trying to get the dosing right.

It's good to see the family again. The boys are doing good, and Glenn and Jannelle are doing great taking care of them. Thanks to Alyssa for dinner tonight. Pray for Trevor who just came down with a small sore throat. We were hoping to take the boys to visit Krista this weekend, but if he gets sick that won't be possible. Plus, if I get sick, I won't be able to go back to stay with Krista when she needs me. Also, please pray for my father who will be getting his abdominal aortic aneurysm repaired Tuesday. It's not supposed to be too risky, but it is in a dangerous area. My mother was going to visit us next week, but will need to take care of Dad for a bit. Glenn and Jannelle have agreed to stay longer, so we've got the kids covered. It's just a change of plan and we trust that God is working even in the things we didn't count on.

Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails. (Proverbs 19:21)