Saturday, January 31, 2009
Another challenge the doctors have always warned us about is mucositis. According to the wikipedia:
Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy and hematopoietic stem cell transplantation...
It's no surprise, then, that Krista has come down with full-blown mucositis. The related mouth and throat pain is the most difficult part for her. The inflammation is visible in her cheeks and the doctors need to keep it under control so it doesn't restrict her airway. They're adding benadryl to the mix to try to bring down the inflammation, and if that doesn't work they may try steroids. The benadryl makes her really groggy, and she's in and out of sleep -- sometimes in the middle of a conversation.
Please add stabilizing her blood levels and healing from mucositis to your prayers for Krista, as well as restoring her appetite. She hasn't eaten much in the past three days, between the nausea and being unable to chew. The nurse said she didn't think that adding an IV food drip would be a good idea because the vitamins in it can end up upsetting her stomach.
O LORD, I call to you; come quickly to me.
Hear my voice when I call to you.
May my prayer be set before you like incense;
may the lifting up of my hands be like the evening sacrifice.
Set a guard over my mouth, O LORD;
keep watch over the door of my lips.
Thursday, January 29, 2009
The first sign that this wasn't going to be easy came from the administering RN, who asked Krista if she had any hard candies. Hard candies? Why? People getting a stem-cell transfusion often have a tickling sensation in their throats. Krista asked if she could use M&Ms, but the RN said that she didn't want her to choke. She wanted me (Mike) to run downstairs to get some candy, but I didn't want to miss anything. Fortunately, someone mentioned that they had some lollipops at the transplant desk. Look... it's heart-shaped -- Krista's favorite! That was a nice touch.
Once we got that settled, the RN proceeded to roll off some more possible immediate effects: fever, abdominal pains, coughing, and flu-like symptoms. This wasn't sounding very good.
The blood arrived in a red picnic cooler. I guess they had to put it in something, but I was expecting something a little more medical looking. The transplant coordinator had previously gone into great detail about how it was stored at -197 degrees in a 3-foot cube refrigerator and shipped at a cost of $40,000. Seems like it should have been carried in like the Ark of the Covenant. Nah. Just a picnic cooler.
We asked the delivery staff about the freezer, and they informed us that they had to defrost the cord-blood in order to administer it. Makes sense, huh? Plus, they diluted it a bit to make it go down easier. That's the bag there in the picture on the left.
They put the bag way up high and connected it to her IV ports, just letting gravity feed it in. It's hiding up top in the picture on the right.
And within about twenty seconds of it entering Krista's body, she started feeling the tickling in her throat and the coughing. The RN was incredulous -- there was such a small amount that had entered when she started reacting. But it was all "normal" reactions, so they continued. And so did Krista's reaction. Her nose started to fill up with with liquid and her coughing intensified, and her breathing became difficult. They had an oxygen sensor on her finger, so they could tell that she wasn't suffocating, but it was a very scary experience for Krista -- who was beginning to feel like she had signed up for a water-boarding experiment. Fortunately, Torquemada had the day off, so the ten in the room (doctors, nurses, interns, and who knows what else) gave her a fast acting diuretic that cleared it up within minutes (and gave her good practice using a bed-pan). They also hooked her up to the oxygen, though it wasn't much help until the diuretic started clearing up her nose so she could breathe. You can see the tubes in her nose there in the picture on the left.
Then we sat around and waited to see if anything else bad would happen. It took a total of two hours before the bag was empty. When everything seemed to be ok, the throng slowly dismissed and she was able to catch a small nap.
The peace didn't last too long, as nausea, aches, and a horrible headache became the soup du jour. The anti-nausea meds seem to cause some pain, while the pain releivers seem to cause nausea, and the combination comes with a headache and intense dreams that kept her jumping out of her sleep through the night. We're trying to back off of taking so much stuff, and Krista seems to be doing a bit better while we watch American Idol.
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade—kept in heaven for you, who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
1 Pt 1:3-6
Wednesday, January 28, 2009
While Krista had a little extra energy this morning, she asked me to make a special post to thank Katherine Marton for the letter she sent earlier in the week. It was so wonderful that she and Tom were wanting to take our boys into their family last week. From the picture you can see that they (and Garret) had a great time together. That's a Darth Vader mask on top of Adam's head and a coyboy hat on Trevor's (and a book(?) on Garret's).
If you would like to send Krista a letter, you can send it to:
Krista English (Room #6125)
Ronald Reagan UCLA Medical Center
757 Westwood Plaza
Los Angeles, CA 90095
Tuesday, January 27, 2009
The removal of the chemotherapy brought some, but far from complete, relief. Krista still has regular bouts of nausea, diarrhea, and headaches -- all of which they have been able to help to some degree (when asked). She ate and kept down a small dinner of rice, toast, and applesauce, which is a good improvement. There was some suspicion that the muscle pain the other day might have been caused by a sudden drop of sodium brought on by the chemo. They adjusted her meds accordingly, and she seemed to improve earlier in the day (though there was a short return of the muscle pain in the evening).
In the midst of the suffering today, Krista had a moment to shed tears of joy. Alyssa and Cory Steffen had graciously taken our kids into their family yesterday (they'll be there for a while). Alyssa let us know today that the boys are doing great, and shared with us that their bedtime prayers were so precious that it brought tears to her eyes. That was so wonderful to hear how they have grown in their own faith through all this!
Another event today helped to get our minds off the immediate suffering, too. The hospital chaplain stopped by to see how we were doing and pray for us. She asked Krista what brings her hope in the midst of all this, and Krista recounted how God had led her to Psalm 41:1-2 as soon as she was diagnosed and the funny story about getting "raised up on her sickbed". It was good to remember how God provided that word of hope so early on.
Remember your word to your servant,
for you have given me hope.
My comfort in my suffering is this:
Your promise preserves my life.
Monday, January 26, 2009
That's a simplistic explanation of the procedure, but there's a lot more to the story. Since Krista's pretty heavily sedated right now, I (Mike) will take the opportunity to fill in some of the details that are missing from that clinical picture.
Yesterday, Krista began to feel what she described as "nerve-pain". It began as shooting pains in her legs, then her arms, then her back and sides. She has been through many different kinds of pains before from child-birth, Lupus-flares, and chemotherapy, but she said that this was unlike anything she had ever experienced. The doctors have explained to me that this is probably just the effect of the new chemotherapy doing its job -- attacking the diseased marrow. But the chemo is unable to distinguish between disease and health, the excruciating pain comes ultimately from a vital part of Krista's body being put to death.
Blood is so integral to people and animals that without it no creature can live. The Scriptures repeatedly make reference to "the life of every creature is its blood" (Lev 17:11,14; Deut 12:23). According to the wikipedia, each red blood cell has a life-cycle of about 100-120 days in the body, so it has to be replenished frequently. The marrow is responsible for making the various blood cells, and it makes about 2 million infantile cells per second throughout the body. What an amazing system it is! But for the stem-cell transplant to work, this lifespring must be eliminated completely.
Getting rid of a person's blood factory is not all that easy. Even with a few days of high-dose chemotherapy, the doctors were concerned that some cells may have "slipped through". [It kind of reminds me of Michael Criton's point he emphasized throughout Jurassic Park: "Life will find a way."] So that's why they prescribed four days of full-body radiation before the chemo -- just to make sure that the whole thing gets knocked out. And it is getting knocked-out, but it's not going without a fight.
Right now that fight is expressing itself through God's megaphone: pain. God has designed the body to have an intense desire to live, and infused each of his creatures with incredible self-protection devices. Somehow, even though there are supposed to be no nerve endings in the marrow, Krista's body has found a way to say, "Hey! There's something wrong here!"
The best that the doctors can do is to treat the symptoms and try not to do any additional damage by doing so. In addition to the chemo and transplant preparation medicines, she's getting anti-nausea medicine, anti-pneumonia medicine, and a host of narcotics to ease the pain. She's got eight bags connected to four infusion pumps going into her by three IV's. (She has a double Groshong line from previous chemotherapy, and they had to put an extra standard IV port in last night because the pre-transplant meds aren't compatible with the other meds.) Their best guess is that since the pain is probably from the chemo, that it may subside tomorrow since it's her day of rest before the introduction of the new lifespring via the cord-blood from a baby born in Australia ten years ago. Amazing!
So, we wait for some kind of deliverance from the pain, crying out like Job,
"And now my life ebbs away;
days of suffering grip me.
Night pierces my bones;
my gnawing pains never rest.
and remembering like David,
weeping may remain for a night,
but rejoicing comes in the morning.
Sunday, January 25, 2009
On the upside, my mom and Glen got to visit Mike and I in the hospital. It was very nice of them to drive all the way out from Colorado just to be bored with us in the hospital. We had some great fun playing Farkle (a dice game), especially yesterday when I was at the peak of my energy burst.
That energy burst had me so buzzing that I couldn't sleep last night. Not a wink. Really. I was up the whole night. I took a bath around 2 am, which, though it was nice, didn't help my sleeplessness. The nurse even gave me a sleeping pill, which did nothing. I was that wired.
Then morning came, and with it came new bags of chemo and nausea. The lighter anti-nausea wasn't working, so they bumped me up to Adavan which works great and got me to sleep a little (finally). Good for me, but not so good for our guests. I was able to rouse myself for a last game of Farkle before they left.
After while after they left a new sensation started assaulting me -- nerve pain. There's a terrible shooting pain running down my leg and arm that the doctor says happens with people that have lengthy stays in the hospital. I'm doing what they tell me to do, adjusting the bed into a sitting up position, standing up, walking around, etc., but I don't have the energy to keep it up very long right now. Please pray for me about this because it is excruciating!
Tomorrow, I get my last bags of chemo which is something to look forward to getting over with. Unfortunately, that is really just the beginning of the danger for me. The goal of the radiation/chemo treatment is to wipe out my immune system, which should happen by Wednesday according to the doctors. My counts were down slightly today, but they should continue on their way down to zero. At that point they can administer the stem-cells. And then I will be surviving on blood transfusions while we wait for the fledgling immune system to take over.
I am in pain and distress;
may your salvation, O God, protect me.
I will praise God's name in song
and glorify him with thanksgiving.
Saturday, January 24, 2009
Thank you for your prayers people! On the last day of my radiation (Friday), the blah feeling that was so oppressive, just kind of went away. I was able to do things again that I've wanted to do like read, talk with Mike, listen to the Word on audio, play Word Twist (ha, Gail and James), and even took a couple laps around the halls.
I could not seem to sleep last night and then at 3 a.m. there was a "Code Blue" down the hall which was very alarming, with alarms, loudspeaker calls for the "code blue team" and lots of running to get to the patient. I felt like God was keeping me at vigil to pray for this patient all night instead of sleeping, to which I'm thankful.
My mom and Glen are on their way today for a visit after their week in Las Vegas, and I'm glad I'll have the energy for visitors. They're staying 1 night and leaving the next day, stopping by again before heading back to CO.
Mike should be going home tomorrow to get clean clothes, shower, pick up the mail and most importantly visit the kids. The kids are having a wonderful time with their friends and we are so grateful for their first week with the Martons going soooo well. They even caught a cold the first day, but it was very short lived, and Mike and I didn't get it - yay!
I'm so grateful for all your prayers for my health, for no infections, for no chronic graft vs. host disease and no serious side effects from the treatment, but I also hope that you are praying for God to use me in this situation to the benefit of others and to glorify Himself.
This passage blessed me soooo much today, I hope you'll take time to read it (since it's not just 1-2 verses this time, but it's not that long either). Enjoy and be filled...
2 Corinthians 4:1-18
Treasures in Jars of ClayTherefore, since through God's mercy we have this ministry, we do not lose heart. Rather, we have renounced secret and shameful ways; we do not use deception, nor do we distort the word of God. On the contrary, by setting forth the truth plainly we commend ourselves to every man's conscience in the sight of God. And even if our gospel is veiled, it is veiled to those who are perishing. The god of this age has blinded the minds of unbelievers, so that they cannot see the light of the gospel of the glory of Christ, who is the image of God. For we do not preach ourselves, but Jesus Christ as Lord, and ourselves as your servants for Jesus' sake. For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.
It is written: "I believed; therefore I have spoken." With that same spirit of faith we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
Friday, January 23, 2009
The radiation is x-rays -- just like the ones they take pictures of your bones with using about 0.02 rads. Each dose for me is about 165 rads, not enough to burn skin, but enough to start tearing down my old blood factory. So they wheel me off at 4 am and 8 pm and make me lie down for about 20 minutes on my side, then flip me over to the other side for another 20 minutes. Did I mention that they use tape to keep me from moving? Not fun.
Fortunately, there haven't been a lot of side-effects yet. Some nausea and headaches, and I'm in and out of sleep a lot of the day. My appetite had been ok, but now nothing really sounds good. I brought all this stuff to do, but my energy is so low it's all pretty useless. So I'm feeling very blah, blah, blah... and I'm only getting this post out because Mike is ghost-writing as me. (Did anyone notice the style change?)
So my last radiation dose is coming early today (around 4:30 pm). Tomorrow and the next day I get some chemo, and then my white blood counts should drop to zero (they're at 4.62 today). Tuesday should be my new birthday, being the introduction of the cord-blood cells into my body. And after that comes the longer road of recovery...
He asked me, "Son of man, can these bones live?"
I said, "O Sovereign LORD, you alone know." Then he said to me, "Prophesy to these bones and say to them, 'Dry bones, hear the word of the LORD! This is what the Sovereign LORD says to these bones: I will make breath enter you, and you will come to life...'"
Saturday, January 10, 2009
This Monday, the 12th, I am to go in for an appointment to get measured for the upcoming radiation. They'll do a simulation after meeting with the doctor. Then I go back up to the oncology dept. to get more blood work done and another bone marrow biopsy! Ouch! I really don't like these. Your prayers last time saw me through the painful process and it was the best one I ever had so I am asking for your prayers again! I have no idea what time it will be done because they are squeezing me in. Just pray.
To my delight, I am blessed to have the most amazing friends in all the world! Not only are our children going to be well taken care of the whole time while I'm away, but we had more families who were willing than I needed for the weeks ahead. And they seem genuinely excited about the responsibility of caring for our precious gifts. I was just floored by the response and want to thank each of you personally who are helping in this way. We are praying that our kids will be a blessing to you.
Those of you on our backup list are just as valued...I never expected that out of the small handful of families I asked, so many would jump at the chance to serve in this way. Thank you! You may be called upon when I get back and need someone to take the kids for the afternoon so I can rest.
We decided on our local friends caring for the children because we want to keep things as normal as possible for them. Also being around their friends will help to distract them from the loneliness of a quiet house without mom and dad! Adam showed the for the first time last night that he was going to miss me...he looked sad as we talked about what it was going to be like staying with others. When asked, he admitted he was going to miss me bigtime. I think he said he didn't want me to go. You can be praying for the kids adjustment and for peace and calm in their hearts.
My mother-in-law will be coming to stay with us after I return home so that I will be able to get the rest I need and she can help in our household. She's soooo good at that kind of care, and I will need it...just like a newborn babe needs to sleep a lot, my new immune system will require me to rest as it works on rebuilding all those new red, white and platelet cells. Even more so because I'm receiving stem cells from the umblical cord of a newborn infant. You know that means I'm having a birthday in January now!? I want cake and a birthday hat on the day I receive those cells!
Gotta go and get ready for the upcoming home away from home experience for all of us!